Voices in Bioethics

Alone on an Island

Erin Kwolek — 2022-04-04

Malta is a small predominantly Catholic island-nation in the Mediterranean ocean and there is a complete ban on abortion in the country – there are no exemptions for rape, incest, fetal anomalies, or to save a pregnant woman’s life. Both medical and surgical abortions are illegal and women choosing to end pregnancies have often sought to have abortion care outside of Malta, traveling primarily abroad at great personal cost. Medical care in Malta is otherwise free at the point of care. Options for the care are extremely limited as there is great public support for the Maltese abortion ban. As the government of Malta imposed travel restriction in the interest of containing spread of SARS-CoV2, women faced further limitations in their ability to access safe, effective abortion care in other countries. Many women have ordered medications online and have self-managed their abortion care. Women who have had abortions or people who facilitate abortions in Malta do face criminal charges and women who seek medical management of complications of self-managed abortions do so where the potential of charges exists. Denying women access to safe and private abortion care has the potential to cause significant physical, psychological, and social effects and unfairly harms those who are experiencing unwanted pregnancy. Given the global COVID pandemic, the Maltese government has a responsibility to ensure access to safe abortion care whether abroad or self-managed and such care should be decriminalized.

Why Jesuit Universities Should Provide Contraception

Sweta Bhoopatiraju — 2019-03-06

Jesuit universities often espouse a goal of care for the entire person’s mind, body, and spirit. However, some Jesuit institutions contradict this goal, since they do not currently provide contraceptives and birth control prescriptions for pregnancy prevention, and some do not provide contraceptive educational resources for students. Despite the merits of some arguments that requiring Jesuit universities to provide on-campus contraception violates religious freedom, Jesuit universities should provide on-campus contraception. The high rates of unintended pregnancies in college-aged students, women’s generally positive perceptions of contraception, the need to combat discrimination against women, and women’s rights as detailed by international treatises all necessitate such a decision.

Even though Jesuit universities’ health insurance plans abide by the Patient Protection and Affordable Care Act’s (PPACA’s) Contraceptive Mandate, which requires employers and health insurers to cover contraceptive costs within insurance plans, some universities’ policies prevent students from reaping the plan’s benefits on campus. These policies can be better understood through the example of Saint Louis University’s (SLU) on-campus contraception policies, since SLU is a Jesuit university. For example, SLU’s Student Health Center claims to abide by “Jesuit Catholic beliefs regarding family planning” and does not provide contraceptives or prescription medication for pregnancy prevention. If a student wishes to receive birth control for pregnancy prevention, the person must obtain it off-campus. Even if a student is interested in obtaining birth control off-campus, however, the person often cannot receive on-campus education on proper birth control use or options. For example, the SLU Wellness Initiative is prohibited from providing information about contraception.

By denying students on-campus access to contraceptive services, Jesuit universities deny students full bodily autonomy and restrict their ability to act upon decisions they feel will enhance their bodily and mental health, both of which are central to core Jesuit principles.

Unintended pregnancies are prevalent in college-aged women, constituting 58.5% of all pregnancies for women aged 20-24. College-aged women also have the highest rates of abortions (Henshaw 1998). However, as access to contraceptives increased in recent years, unintended pregnancy rates declined, implying that increased contraceptive usage may play a role in successfully preventing pregnancies. One study concluded that to decrease the abortion rate, access to contraception should be promoted (Henshaw 1998). The Catholic background of Jesuit universities sanctifies the life of the unborn and condemns abortion. Pope Francis, leader of the Catholic Church, stated that birth control, when compared to abortions, is “the lesser of two evils” and “not an absolute evil.” If Jesuit universities seek to lower the abortion rate in their student populations, they should make contraception and more accessible to students.

Apart from easily accessible birth control, education on birth control is fundamental for effective use and lower unintended pregnancy and abortion rates. One study showed that 65% of unplanned pregnancies occurred when contraception was used. Reasons for this included contraception misuse or failure to withdraw (Bajos, Leridon, Goulard, Oustry, & Job-Spira 2003). If university programs that are effective in their outreach, like the SLU Wellness Initiative, provide education on birth control, then students might become aware of resources available to them so that they can make informed decisions about their bodies, curbing abortion rates.

Like all universities, Jesuit universities have an obligation to serve the interests of their students and provide for their well-being. Women, who university contraception policy disproportionately affects, generally share positive attitudes about contraception. Women feel that bodily and reproductive control are important to some degree and should be available to women. This sentiment may explain why women report more benefits of condom use and costs of unprotected sex than vice versa (Parsons, Halkitis, Bimbi, & Borkowski 2000). Also, students at universities whose college health centers provide emergency contraceptive pills (ECPs) praised these services and expressed gratitude to the clinical staff, noting the convenience and inexpensiveness of the on-campus services. Though it is true that sexually active female students are less likely to use contraception if they are religious, many religious college-aged women still feel that reproductive control is important to some degree and should be available to women. Among religious female students, 48% chose abortions as a solution to an unwanted pregnancy (Notzer, Levran, Mashiach, & Soffer 1984). Thus, allowing access to birth control will allow Jesuit universities to better serve their students.

Even though Jesuit universities’ Catholic principles and ideals focus on serving the most vulnerable and marginalized communities, some on-campus contraception policies discriminate disproportionately against women and even more harshly against vulnerable groups of women, including those with disabilities. Women with invisible and/or visible disabilities face difficulties when seeking contraceptive care and report a lack of access to health information. This lack of access can impact these women’s ability to obtain appropriate birth control, especially since they live in a culture that questions their sexuality, as well as their capacity and desire for sexual activity (Kaplan 2006). Additionally, people with disabilities face barriers, physical and otherwise, that make receiving contraception and information at farther off locations inconvenient. On-campus contraception, however, might make contraception more accessible and convenient for students. This policy would be less discriminatory towards students with disabilities.

By not providing contraception on campus, universities also discriminate against women of lower socioeconomic status, many of whom are women are color. These women have a higher risk than others of contraceptive misuse and nonuse, since they are less likely to have received proper education of birth control options and methods and are less likely to have afforded and used contraception previously. They are also more likely to receive abortions. Increasing access to and promoting long-acting reversible contraceptives, however, have been effective in lowering fertility and abortion rates among young women of low socioeconomic status (Forrest 1994). The women involved in programs promoting contraceptive use expressed a higher level of well-being, noting improved ability to continue and complete their education and obtain jobs without having to care for children (Forrest 1994). If Jesuit universities wish to achieve their ideals and combat systemic disadvantages women of color and low socioeconomic status face in both higher education and the job market, they must provide resources like birth control and birth control education so that these women can reap the value of their education and better control their futures.

Providing contraceptives and contraceptive education also protects the religious freedoms of students who may not identify with the Christian faith. Jesuit universities are often diverse communities of people from different religious and nonreligious backgrounds. Preventing easy access to birth control and appropriate education permits the more powerful administration to force its religious views onto less powerful students and deny them useful services they might have otherwise utilized. To truly embrace and serve their diverse student body, universities must protect the religious freedoms of its less powerful students and allow them to act according to their own beliefs in choosing to use or not use contraception (Corbin & Smith 2013).

It does not suffice that some students seeking to obtain contraception have the means to obtain it off-campus and have costs covered by insurance. Denying service to someone based on that person’s identity is humiliating, frustrating, and dehumanizing, all of which are characterizations of discrimination (Lim & Melling 2014). The remedy for this sort of injustice, then, is recognition rather than redistribution. In the context of Jesuit universities’ contraception policy, women are discriminated against. Refusal to provide contraception and educational resources through campus directives can be humiliating to the lifestyle choices of women, whose sexual and reproductive health needs have historically been neglected. Instead of denying services on-campus and simply providing birth control elsewhere (a policy that stigmatizes a woman’s choice to use contraceptives by limiting its accessibility), universities must recognize the dignity in a woman’s choice to control her body and offer contraceptives on-campus.

In considering the rights of vulnerable groups, it is also important to consider the conclusions of revered international organizations like the United Nations. The United Nations’ Convention on the Elimination of All Forms of Discrimination Against Women of 1979 and the United Nations’ International Conference on Population and Development of 1994 both

responded to historical and systemic discrimination against women globally (Shalev 2000). They identified women’s rights as human rights and stressed the importance of rights to easy access to contraception, access to health care and education, and rights to liberty and foundation of families (Cook 1993). The refusal of some universities to not provide on-campus contraceptives for pregnancy prevention limits contraception accessibility and prohibits preventative family planning measures and contraceptive education, which are central to the United Nations’ conclusions. Thus, the historical and systemic discrimination against women is perpetuated through some Jesuit universities’ refusal to provide on-campus contraception.

Additionally, while it is true that Jesuit universities’ missions and goals are grounded in and shaped by Jesuit principles and ideals, the institutions do not function primarily as a space for people to express their religion through community, as is done in houses of worship like churches and mosques. The university consists of students and staff from diverse religious (or nonreligious) backgrounds, and SLU’s main purpose is to provide students with an education in exchange for their money. Thus, Jesuit universities arguably function more like corporations than houses of worship, and their religious freedom is not violated under the Religious Freedom and Restoration Act (RFRA), a federal law that protects interests in religious freedom. This is because only individuals can have substantial burden of religious conscience (Corbin & Smith 2013). This interpretation is supported by the Supreme Court, which has repeatedly ruled that First Amendment rights of corporations differ from those of humans. For example, even though the Supreme Court ruled in Citizens United v. FEC that the Free Speech Clause protects corporate speech, it did so to affirm people’s right to hear all points of view regardless of source—not because corporations have a First Amendment-protected right to speak (Corbin & Smith 2013). Also, corporations and owners are separate legal entities, as ruled in Cedric Kushner Promotions, Ltd. v. King (Corbin & Smith 2013). This implies that the Catholic founders of Jesuit universities and the university itself are different legal entities, and that because of this, its founders cannot speak on behalf of the institution. The university’s rights are not the founders’ or administration’s rights. Thus, because universities function less like houses of worship and more like corporations, which cannot experience substantial burden of religious conscience, accessibility to on-campus contraception does not violate religious freedom protected by the RFRA.

Requiring on-campus accessibility to contraceptives and contraceptive education is necessary for Jesuit universities to ensure that all students are treated fairly and that their needs are attended to. While it is true that some Catholic beliefs clash with modern mainstream feminism, values like serving the most vulnerable populations and working towards the greater good, seem to connect well with feminism. As the Catholic Church slowly embraces increasingly modern interpretations of Catholic theology, Jesuit schools must reevaluate their commitments and policies and understand that the manifestation of the Jesuit goal of care for the entire person can be different for everyone.

Bibliography

Bajos, Nathalie, Henri Leridon, Helene Goulard, Pascale Oustry, Nadine Job-Spira. “Contraception: from accessibility to efficiency,” Human Reproduction 18, no. 5 (May 2003): 994-999 https://doi.org/10.1093.

Cook, Rebecca. “International Human Rights and Women's Reproductive Health,” Studies in Family Planning 24, no. 2 (1993): 73-86. https://doi.org:10.2307/2939201.

Corbin, Caroline Mala and Steven D. Smith. “Debate: The Contraception Mandate and Religious Freedom,” University of Pennsylvania Law Review Online 161, no. 261 (2013).

Forrest, Jacqueline Darroch. “Epidemiology of unintended pregnancy and contraceptive use,” American Journal of Obstetrics & Gynecology 170, no. 5 (1994): 1485-9. https://doi.org/10.1016/S0002-9378(12)91804-9.

Henshaw, Stanley K. “Unintended Pregnancy in the United States,” Family Planning Perspectives 30, no. 1 (1998): 24-29.

Kaplan, Clair. “Special Issues in Contraception: Caring for Women with Disabilities,” Journal of Midwifery & Women’s Health 51, no. 6 (2006): 450-456.

Lim, Marvin and Louise Melling. “Inconvenience or Indignity Religious Exemptions to Public Accommodations Laws,” Journal of Law and Policy 22, no. 2 (2014): 705-726.

Miller, Laura. “Emergency Contraceptive Pill (ECP) Use and Experiences at College Health Centers in the Mid- Atlantic United States: Changes Since ECP Went Over-the-Counter,” Journal of American College Health 59, no. 8 (2001): 683-689.

Notzer, Notzer, David Levran, Shlomo Mashiach, Sarah Sqffer. “Effect of religiosity on sex attitudes, experience and contraception among university students,” Journal of Sex and Marital Therapy 10, no. 1 (2008): 57-62. https://doi.org/10.1080/00926238408405790.

Parsons, Jeffrey, Perry Halkitis, David Bimbi, Thomas Borkowski. “Perceptions of the benefits and costs associated with condom use and unprotected sex among late adolescent college students,” Journal of Adolescence 23, no. 4 (2000): 377-391.

Shalev, Carmel. “Rights to Sexual and Reproductive Health: The ICPD and the Convention on the Elimination of All Forms of Discrimination against Women,” Health and Human Rights 4, no. 2 (2000): 38-66. https://doi.org/10.2307/4065196.

Embryonic Stem Cell Research

Lillian Nwigwe — 2019-03-06

Introduction

In November 1998, two teams of U.S. scientists confirmed successful isolation and growth of stems cells obtained from human fetuses and embryos. Since then, research that utilizes human embryonic cells has been a widely debated, controversial ethical issue. Human embryonic cells possess the ability to become stem cells, which are used in medical research due to two significant features. First, they are unspecialized cells, meaning they can undergo cell division and renew themselves even with long periods of inactivity. Secondly, stem cells are pluripotent, with the propensity to be induced to become specified tissue or any “organ-specific cells with special functions” depending on exposure to experimental or physiologic conditions, as well as undergo cell division and become cell tissue for different organs.

The origin of stem cells themselves encapsulates the controversy: embryonic stem cells, originate from the inner cell mass of a blastocyst, a 5-day pre-implantation embryo. The principal argument for embryonic stem cell research is the potential benefit of using human embryonic cells to examine or treat diseases as opposed to somatic (adult) stem cells. Thus, advocates believe embryonic stem cell research may aid in developing new, more efficient treatments for severe diseases and ease the pain and suffering of numerous people. However, those that are against embryonic stem cell research believe that the possibility of scientific benefits of research do not outweigh the immoral action of tampering with the natural progression of a fetal development and interfering with the human embryo’s right to live. In light of these two opposing views, should embryonic stem cells be used in research? It is not ethically permissible to destroy human embryonic life for medical progress.

Personhood and the Scientific Questionability of Embryonic Stem Cell Research

The ethics behind embryonic stem cell research are controversial because the criteria of ‘personhood’ is “notoriously unclear.” Personhood is defined as the status of being a person, entitled to “moral rights and legal protections” that are higher than living things that are not classified as persons. Thus, this issue touches on existential questions such as: When does life begin? and What is the moral status that an embryo possesses? There is a debate on when exactly life begins in embryonic development and when the individual receives moral status. For example, some may ascribe life starting from the moment of fertilization, others may do so after implantation or the beginning of organ function. However, since the “zygote is genetically identical to the embryo,” which is also genetically identical to the fetus, and, by extension, identical to the baby, inquiring the beginning of personhood can lead to an occurrence of the Sorites paradox, also acknowledged as “the paradox of the heap.”

The paradox of the heap arises from vague predicates in philosophy. If there is a heap of sand and a grain is taken away from that heap one by one, at what point will it no longer be considered a heap – what classifies it as a heap? The definition of life is similarly arbitrary. When, in the development of a human being, is an embryo considered a person with moral standing? The complexity of the ethics of embryonic stem cell research, like the Sorites paradox, demonstrates there is no single, correct way to approach a problem; thus, there may be multiple different solutions that are acceptable. Whereas the definition of personhood cannot be completely resolved on a scientific basis, it serves a central role in the religious, political, and ethical differences within the field of embryonic stem cell research. Some ethicists attempt to determine what or who is a person by “setting boundaries” (Baldwin & Capstick, 2007).

Utilizing a functionalist approach, supporters of embryonic stem cell research argue that to qualify as a person, the individual must possess several indicators of personhood, including capacity, self-awareness, a sense of time, curiosity, and neo-cortical function. Proponents argue that a human embryo lacks these criteria, thereby is not considered a person and thus, does not have life and cannot have a moral status. Supporters of stem cell research believe a fertilized egg is just a part of another person’s body until the cell mass can survive on its own as a viable human. They further support their argument by noting that stem cell research uses embryonic tissue before its implantation into the uterine wall. Researchers invent the term “pre-embryo” to distinguish a pre-implantation state in which the developing cell mass does not have the full respects of an embryo in later stages of embryogenesis to further support embryonic stem cell research. Based on this reductionist view of life and personhood, utilitarian advocates argue that the result of the destruction of human embryos to harvest stem cells does not extinguish a life. Further, scientists state that any harm done is outweighed by the potential alleviation of the suffering enduring by tremendous numbers of people with varying diseases. This type of reasoning, known as Bentham’s Hedonic (moral) calculus, suggests that the potential good of treating or researching new cures for ailments such as Alzheimer’s disease, Parkinson’s disease, certain cancers, etc. outweighs any costs and alleviate the suffering of persons with those aliments. Thus, the end goal of stem cell use justifies sacrificing human embryos to produce stem cells, even though expending life is tantamount to murder. Opponents of embryonic stem cell research would equate the actions done to destroy the embryos as killing. Killing, defined as depriving their victims of life, will therefore reduce their victims to mere means to their own ends. Therefore, this argument touches on the question: if through the actions of embryotic stem cell research is “morally indistinguishable from murder?” (Outka, 2013). The prohibition of murder extends to human fetuses and embryos considering they are potential human beings. And, because both are innocent, a fetus being aborted and an embryo being disaggregated are direct actions with the intention of killing. Violating the prohibition of murder is considered an intolerable end. We should not justify this evil even if it achieves good. Under the deontological approach, “whether a situation is good or bad depends on whether the action that brought it about was right or wrong,” hence the ends do not justify the means. Therefore, under this feeble utilitarian approach, stem cell research proceeds at the expense of human life than at the expense of personhood.

One can reject the asserted utilitarian approach to stem cell research as a reductionist view of life because the argument fails to raise ethical concerns regarding the destruction embryonic life for the possibility of developing treatments to end certain diseases. The utilitarian approach chooses potential benefits of stem cell research over the physical lives of embryos without regard to the rights an embryo possesses. Advocates of embryonic stem cell research claim this will cure diseases but there is a gap in literature that confirms how many diseases these cells can actually cure or treat, what diseases, and how many people will actually benefit. Thus, killing human embryos for the potentiality of benefiting sick people is not ethically not ethically permissible.

Where the argument of personhood is concerned, the development from a fertilized egg (embryo) to a baby is a continuous process. Any effort to determine when personhood begins is arbitrary. If a newborn baby is a human, then surely a fetus just before birth is a human; and, if we extend a few moments before that point, we would still have a human, and so on all the way back to the embryo and finally to the zygote. Although an embryo does not possess the physiognomies of a person, it will nonetheless become a person and must be granted the respect and dignity of a person. Thus, embryotic stem cell research violates the Principle of “Full Human Potential,” which states: “Every human being […] deserves to be valued according to the full level of human development, not according to the level of development currently achieved.” As technology advances, viability outside the womb inches ever closer to the point of inception, making the efforts to identify where life begins after fertilization ineffectual. To complicate matters, as each technological innovation arrives, stem-cell scientists will have to re-define the start of life as many times as there are new technological developments, an exhausting and never-ending process that would ultimately lead us back to moment of fertilization. Because an embryo possesses all the necessary genetic information to develop into a human being, we must categorically state that life begins at the moment of conception. There is a gap in literature that deters the formation of a clear, non-arbitrary indication of personhood between conception and adulthood. Considering the lack of a general consensus of when personhood begins, an embryo should be referred to as a person and as morally equivalent to a fully developed human being.

Having concluded that a human embryo has the moral equivalent of a fully-fledged human being, this field of research clearly violates the amiable rights of personhood, and in doing so discriminates against pre-born persons. Dr. Eckman asserts that “every human being has a right to be protected from discrimination.” Thus, every human, and by extension every embryo, has the right to life and should not be discriminated against their for “developmental immaturity.” Therefore, the field of embryonic stem cell research infringes upon the rights and moral status of human embryos.

Principle of Beneficence in Embryonic Stem Cell Research

The destruction of human embryos for research is not ethically permissible because the practice violates the principle of beneficence depicted in the Belmont Report, which outlines the basic ethical principles and guidelines owed to human subjects involved in research. Stem cell researchers demonstrate a lack of respect for the autonomy and welfare of the human embryos sacrificed in stem cell research.

While supporters of embryonic stem cell research under the utilitarian approach argue the potential benefits of the research, the utilitarian argument however violates the autonomy of the embryo and its human rights, as well as the autonomy of the embryo donors and those that are Pro-Life. Though utilitarian supporters argue on the basis of rights, they exclusively refer to the rights of sick individuals. However, they categorically ignore the rights of embryos that they destroy to obtain potential disease curing stem cells. Since an embryo is regarded as a human being with morally obligated rights, the Principle of Beneficence is violated, and the autonomy and welfare of the embryo is not respected due to the destruction of an embryo in stem cell research. Killing embryos to obtain stem cells for research fails to treat embryos as ends in an of themselves. Yet, every human ought to be regarded as autonomous with rights that are equal to every other human being. Thus, the welfare of the embryo is sacrificed due to lack of consent from the subject.

The Principle of Beneficence is violated when protecting the reproductive interests of women in infertility treatment, who are dependent on the donations of embryos to end their infertility. Due to embryonic stem cell research, these patients’ “prospects of reproductive success may be compromised” because there are fewer embryos accessible for reproductive purposes. The number of embryos necessary to become fully developed and undergo embryonic stem cell research will immensely surpass the number of available frozen embryos in fertility clinic, which also contributes to the lack of embryos available for women struggling with infertility. Therefore, the basis of this research violates women’s reproductive autonomy, thus violating the Principle of Beneficence.

It is also significant to consider the autonomy and welfare of the persons involved. The autonomous choice to donate embryos to research necessitates a fully informed, voluntary sanction of the patient(s), which poses difficulty due to the complexity of the human embryonic stem cell research. To use embryos in research, there must be a consensus of agreement from the mother and father whose egg and sperm produced the embryo. Thus, there has to be a clear indication between the partners who has the authority or custody of the embryos, as well as any “third party donors” of gametes that could have been used to produce the embryo because these parties’ intentions for those gametes may solely have been for reproductive measures only. Because the researchers holding “dispositional authority” over the embryos may exchange cell lines and its derivatives (i.e., genetic material and information) with other researchers, they may misalign interests with the persons whose gametes are encompassed within the embryo. This mismatch of intent raises complications in confidentiality and autonomy.

Lastly, more ethical complications arise in the research of embryonic stem cells because of the existence viable alternatives that to not destroy human embryos. Embryonic stem cells themselves pose as a higher health risk than adult stem cells. Embryonic stem cells have a higher risk of causing tumor development in the patient’s body once the cells are implanted due to their abilities to proliferate and differentiate. Embryonic stem cells also have a high risk of immunorejection, where a patient’s immune system rejects the stem cells. Since the embryonic stem cells are derived from embryos that underwent in vitro fertilization, when implanted in the body, the stem cell’s marker molecules will not be recognized by the patient’s body, resulting in the destruction of the stem cells as a defensive response to protect the body (Cahill, 2002). With knowledge of embryonic stem cells having higher complications than the viable adult stem cells continued use of embryonic stem cells violates the Principle of Beneficence not only for the embryos but for the health and safety of the patients treated with stem cells. Several adult stem cell lines (“undifferentiated cells found throughout the body”) exist and are widely used cell research. The use of adult stem cells represents research that does not treat human beings as means to themselves, thus, complying with the Principle of Beneficence. This preferable alternative considers the moral obligation to discover treatments, and cures for life threating diseases while avoiding embryo destruction.

Conclusion

It is not ethically permissible to destroy human embryonic life for medical progress due to the violations of personhood and human research tenets outlined in the Belmont Report. It is significant to understand the ethical implications of this research in order to respect the autonomy, welfare, beneficence, and basic humanity afforded to all parties involved. Although embryonic stem cell research can potentially provide new medical advancements to those in need, the harms outweigh the potential, yet ill-defined benefits. There are adult stem cell alternatives with equivalent viability that avoid sacrificing embryos. As society further progresses, humans must be cautious of compromising moral principles that human beings are naturally entitled to for scientific advancements. There are ethical boundaries that are crossed when natural processes of life are altered or manipulated. Though there are potential benefits to stem cell research, these actions are morally and ethically questionable. Thus, it is significant to uphold ethical standards when practicing research to protect the value of human life.

References

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Eckman, Jim. “Human Embryonic Stem Cell Research.” Issues In Perspective, 2011. https://graceuniversity.edu/iip/2011/05/14-2/.; Eckman, Jim. “The Devaluing of Life in America.” Issues In Perspective, 2015. https://graceuniversity.edu/iip/2015/09/the-devaluing-of-life-in-america/.

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The Circumstances Behind Involuntary Hospitalization

Tara Wilkes — 2019-03-06

Would you rather your loved ones be treated effectively or taken to the hospital against their will? Involuntary hospitalization, a legal process by which the mentally ill are forced into treatment at hospitals, is highly contested. Some medical and legal scholars believe those with mental health disorders should not have their personal autonomy restricted or infringed. In contrast, other organizations such as the American Medical Association believe that although mentally ill individuals are often able to make their own decisions, involuntary hospitalization can be a very quintessential tool to stimulate recovery. Involuntary hospitalization should be executed when individuals pose harm to themselves or others, regardless of whether the cause is mental illness or substance abuse.

Imagine someone who you love is kicking, screaming, and threatening the lives of others or yourself. This was my reality before my brother was involuntarily hospitalized. My 16-year-old, younger brother, Declan, has bipolar two, ADHD, and nonverbal learning disorder. These mental health disorders cause my brother to be violent and impulsive, characteristic of hyper-mania. Occasionally, he also has hypomanic episodes at times because of bipolar two, regardless of his medications. In one incomprehensible situation, Declan violently burst into a rage after not a disagreement with our parents; he started throwing vases, punching holes in the walls, and cursing loudly. My single mom, younger sister, and I were endangered in the unstructured setting of my house because of my brother’s instability. In my brother’s case, hospitalization was necessary to ensure the safety of my brother and others surrounding him. Hospitalization allowed psychiatrists to stabilize or modify his medications and open new avenues of treatment. This included transfer to an out-of-state facility last summer. Without hospitalization, Declan would not have found the valuable resources he has today. Involuntary hospitalization was the clear solution to save Declan and my family from a dangerous situation.

My family and I view involuntary hospitalization through different lenses than my brother. Declan believes that his hospitalization was unnecessary and that his violent outburst was just a “one-time mistake.” However, all of Declan's peers and family members could see his emotional and physical improvements following his release from Alexian Brothers. For example, hospitalization taught Declan new coping skills and helped stabilize his medications in an effort to prevent another violent outbreak. Although difficult, Declan’s hospitalization was a necessary result of the violent situation he put my family and me through.

In contrast to Declan, other mentally ill individuals involuntarily placed in hospitals are grateful for their experiences. Patients, generally, have a positive view of involuntary hospitalization after being released, especially if “they experienced the hospital environment as warm, friendly, accommodating to their individual needs, [and feel] safe…” The hospital environment should be a comfortable place for individuals to be treated. I truly believe Declan, as he matures, will also be thankful for the intensive therapy and treatment he received.

The public’s general view of involuntary hospitalization is circumstantial and disorder-dependent as evidenced by the 1996 General Social Survey, conducted by the National Opinion Research Center at the University of Chicago. According to the social survey, the public agrees that troubled people have the capacity to make their own treatment decisions; however, they recommend that individuals who have severe mental disorders, like schizophrenia, should be involuntarily hospitalized. Additionally, “respondents were slightly more likely to condone coercion, if others, rather than the person himself or herself, are seen as in danger” because they can picture themselves in a dangerous situation. Coercion, performing an action against a patient’s free will or resistance, is the most serious consideration in involuntary hospitalization. It is comforting to realize most respondents shrug it off in severe, violent scenarios. The public’s view of involuntary hospitalization corresponds with my view: involuntary hospitalization is necessary under certain circumstances.

Involuntary hospitalization is warranted if mentally ill individuals are capable of harming those around them. As the Clinical Manual of Psychiatry and Law states, “the person must have a mental illness that causes his or her potential for violence” to be appropriately involuntarily hospitalized. Some may suggest that the offender should be managed by the police when violence is involved. When Declan hurt my family and me, police intervention made him more scared, angry, and upset. Although the police did their job to the best of their ability, healthcare professionals are better qualified to treat and regulate disorders. In the healthcare environment, mentally ill individuals who are capable of violence can receive the care they need. Involuntary hospitalization should be utilized whenever a mentally ill person poses a serious threat to his or her community.

Involuntary hospitalization is also necessary when individuals with mental health disorders express consistent suicidal thoughts. Although suicidal individuals may regard hospitalization as harmful to their well-being, this harm is minor in comparison to the outcome of self-harm. Although hospitalization may not prevent suicide, “a person’s right to be treated in the least restrictive environment must be balanced against his or her potential dangerousness to self or others.” The hospital provides a structured setting where suicidal individuals can express their feelings and engage in social support systems. Declan successfully worked through suicidal thoughts and emotions that appeared during his violent outbursts. Since involuntary means hospitalization is only performed with the patient’s best interest at heart, it should be implemented for suicidal individuals.

In addition, a frequent substance abuser who is at risk of posing imminent harm to themselves or others should be involuntarily hospitalized, since addiction to drugs or alcohol can change the brain in fundamental ways. Violence to self and others should be regarded on the same level of concern as substance abuse because both could lead to death or harm. However, a person who is simply intoxicating themselves with no harm to others does not always warrant violating their civil rights. It’s when they pose a harm to others, through an act like drunk driving, that involuntary hospitalization should be implemented. It is a personal choice to harm the body with alcohol or drugs, but if that action poses harm to others, it is justified to violate the abuser’s civil rights. For instance, involuntary hospitalization allowed Declan to be educated on the risks of drugs after he immersed himself into a group of peers that abused drugs. Involuntary hospitalization should not be implemented for every single person who suffers from substance abuse disorder, but it should be utilized for severe substance abusers who are at risk of causing harm to themselves or others.

There are some who believe that involuntary hospitalization is coercive, harmful, and diminishes the patient’s self-esteem, leading to mental instability because of its coercive nature. To suggest the benefits of voluntary hospitalization, the Northwestern University Law Review says, “making the patient responsible for his own treatment, rather than committing him forcibly to an institution, is said to increase his feelings of self-worth and his receptivity to treatment.” However, one must ask: How do feelings of self-worth and increasing one’s self-esteem compare to the fact that the individual could die without treatment? Increasing self-esteem is a benefit to voluntary hospitalization, but involuntary hospitalization has the potential to save lives.

Similarly, opponents to involuntary hospitalization believe that to eliminate coercion, less restrictive means such as outpatient centers should be utilized to treat the mentally ill. This line of reasoning ignores the importance of involuntary hospitalization. These opponents state, “there is little reason why the prescription of medication or the provision of convulsive, psychological, and social therapies also cannot be accomplished on an outpatient.” Although some of these therapies can be accomplished in an outpatient facility, the ease with which this can be done is overstated. The current lack of communication between courts and outpatient centers inhibits the use of outpatient resources. Additionally, community-based care will not be effective until there are more facilities and the public has more acknowledgment of the stigma surrounding mental illness. Therefore, hospitals need to intervene and provide the proper care to the mentally ill while more outpatient services develop. The more medical professionals address this healthcare resource issue, the less they must violate patient civil rights. Although outpatient systems are preferable, the current lack of resources in the mental healthcare system renders involuntary hospitalization necessary.

Involuntary hospitalization is indicated for those with the potential to commit violent acts, high-risk suicidal actions, and pose a risk to themselves or others as a result of substance abuse disorder. Although involuntary hospitalization can be coercive, it exists to treat the mentally ill who do not realize they need help or refuse to take the necessary treatment steps for their health. Other outpatient resources may be used, but with limited resources available involuntary hospitalization is the most feasible option. Hospitalization stabilized my brother and removed my family and I from a dangerous situation. For that, I am forever thankful.

References

Gilboy, Janet A., and John R. Schmidt. “Voluntary Hospitalization of the Mentally Ill.” Northwestern University Law Review 66, no. 4 (1971-1972): 429–53.

American Medical Association. “Patient-Physician Relationships.” In Code of Medical Ethics of the American Medical Association, 1st ed. American Medical Association, 2016.; Council on Psychiatry and Law. “APA Official Actions: Resource Document on Involutnary Outpatient Commitment and Related Programs of Assisted Outpatient Treatment,” 2015.

Danzer, Graham, and Asha Wilkus-Stone. "The Give and Take of Freedom: The Role of Involuntary Hospitalization and Treatment in Recovery from Mental Illness." Bulletin of the Menninger Clinic 79, no. 3 (2015): 255–80.

Pescosolido, B. A., J. Monahan, B. G. Link, A. Stueve, and S. Kikuzawa. "The Public’s View of the Competence, Dangerousness, and Need for Legal Coercion of Persons with Mental Health Problems." American Journal of Public Health 89, no. 9 (1999): 1339–345.

Simon, Robert I., and Daniel W. Shuman. Clinical Manual of Psychiatry and Law. Washington, DC: American Psychiatric Pub., 2007.

Glick, Rachel Lipson. Emergency Psychiatry: Principles and Practice. Philadelphia: Wolters Kluwer, 2008.

Gilboy, Janet A., and John R. Schmidt. "Voluntary Hospitalization of the Mentally Ill." Northwestern University Law Review 66, no. 4 (1971-1972): 429–53. Morse, Stephen J. "A Preference for Liberty: The Case against Involuntary Commitment of the Mentally Disordered." California Law Review 70, no. 1 (1982): 54–106.

An Ethical Analysis of the Global Medical Brain Drain

Christiana Oshotse — 2019-03-06

The ‘medical brain drain’ refers to the mass movement of health care workers from low and middle-income countries (LMICs) to high-income countries, resulting in gross shortages of health care workers in LMICs.1 Strong notions of medical workers’ duty-to-stay in their home country and of equal rights to the life and health of citizens in source countries are important arguments in emphasizing the unethicality of the medical brain drain. I spent part of my childhood in Lagos, Nigeria, and I witnessed some of the detrimental health outcomes individuals experienced when they did not have access to health care.

Current statistics show that there are 1.95 medical workers per 1,000 individuals in Nigeria.4 Lagos is a major city, but in the midst of the daily movement of millions, no reliable network of emergency care exists. As a result, fatalities from car accidents and other medical emergencies are frequent. When individuals sick with chronic or communicable diseases are able to reach one of the few major public hospitals, there are long lines to receive care. There are no policies regulating the distribution of workers, so public agencies deploy workers at their own discretion, which complicates the shortage because these agencies often have conflicting interests in where to assign workers.4

Driving forces such as poverty and political instability intensify the mass emigration of health care workers from LMICs, resulting in critical shortages of remaining workers to meet the basic health needs of citizens in these countries. Medicals workers emigrate for better employment opportunities, to earn higher wages, and to secure the future of their family.3, 6 Other factors include a desire for safer working conditions with greater resources. This is relevant especially in Sub-Saharan African countries whose immense burden of HIV/AIDs and resource limited settings overburden medical staff, who work long hours in conditions often lacking proper protective medical equipment.3, 7, 9 Paradoxically, the emigration of these medical workers further exacerbates the problems that served as the initial driving forces for their migration. Political instability and war are other significant factors that spark high migration rates from medical workers.

Widespread agreement exists that the medical brain drain severely undermines the capacity of LMICs to develop competent health care systems.2-4 Efforts at the national and international levels to impose policies encouraging against the medical brain drain have lacked implementation and remain largely ignored.2 As LMICs increasingly suffer the harmful effects of the medical brain drain, a debate continues over the morality and legality of international health care workers migration and of the policies used to address this phenomenon. A number of important questions are raised in this debate including: Who is to blame for the recruitment of skilled medical workers to high-income countries such as the United States? Is it wrong for medical workers to emigrate or are they rightfully exercising their human rights? Do migrating medical workers have a responsibility to remain in their home country?

The migration of medical workers is part of the current global-health workforce crisis characterized by the severe shortage of health care workers in countries suffering from high burdens of disease.5 The World Health Organization (WHO) estimates that over 4.3 million health care workers are needed to effectively combat HIV/AIDs and other diseases, reduce child mortality and improve maternal health.3, 6-7 The WHO’s estimate only accounts for shortages of health care workers in 57 countries experiencing “critical shortages,” and does not account for countries experiencing shortages in the capacity to provide basic health services (see Figure 1).5-6,8 36 of the 57 countries are in Africa, a continent experiencing 25% of the global burden of disease yet possessing far less of a capacity to provide care to its inhabitants (see Table 1).6 The far-reaching realities of the medical brain drain are not entirely captured by existing data.

The conflicting fundamental moral units (FMUs) of important stakeholders contribute to differing views held about which policies are morally justifiable to address the medical brain drain and is cause for the objections of some against viewing the medical brain drain as an unethical (see Table 2 for further elaboration). 9

Objectors claim that medical workers have the right to leave their country and to choose their profession (see Article 13, UDHR). 16 But the effects of these individuals’ decisions raise significant ethical issues when aggregated at the societal level. One of the questions frequently raised in this debate is whether the freedom of movement of health care workers to migrate for professional reasons should be limited. It is important to acknowledge the conflicting fundamental moral units of two stakeholders involved: that of the health care worker is at odds with that of the source country and its inhabitants.

Least restrictive means approaches should be used to limit the migration of health care workers. These approaches are ethical on the grounds that when healthcare workers emigrate from source countries, thousands of individuals are left without access to adequate health care, which is a violation of their right to life and well-being. Rawl’s justice theory offers the Veil of Ignorance as a thought experiment that allows us to consider what principles to govern life individuals would choose if we were all in an original position of equality to make this decision.14 From this position, all would choose principles that guarantee equal basic liberties for all, to avoid later ending up in the oppressed minority. The injustice evident in the context of the medical brain drain are grounds for employing non-restrictive policies, such as a compulsory service requirement, to curb the emigration of health care workers while preserving everyone’s liberties.5

Source and destination countries disproportionately experience the distributions of benefits and burdens of the medical brain drain. Destination countries experience numerous benefits of added medical workers to strengthen their health systems without undergoing the cost of training these professionals. These benefits include: less need to meet the growing demand of health care workforce, added stability of health systems, and less need to invest in national medical education.9 The medical brain drain has been referred to as “reverse foreign aid” because it is a movement of health care workers from LMICs to support high-income destination countries.5 Others have described the medical brain drain as a sort of “theft” from poor countries by rich countries.

Objections have been raised against these claims, stating that destination countries long stopped actively recruiting health care workers and thus have no obligation to address the effects of the medical brain drain. Though these destination countries may not participate in active recruitment of health care workers from LMICs, they participate in “passive recruitment” of health care workers. Passive recruitment occurs when health care workers indicate their interest to emigrate due to attractive factors in the destination country that make the emigration process easier: the creation of new points systems for immigrants and the establishment of entrance exams in LMICs to medical schools in destination countries.21, 22 Passive recruitment still has detrimental effects on the capacity of source countries to meet the health needs of its inhabitants, and this makes destination countries obligated to rectify the effects of their passive actions.

Others point to the difficulty of documenting the effects that migration of healthcare workers has on health systems and outcomes. They believe that the effects of the medical brain drain are difficult display and slow to perceive.5 They provide alternative factors, such as internal geographical misdistributions of medical workers, as “better” reasons for the poor health outcomes in source countries.23 Fixation on alternate factors distracts from the fact that passive recruitment actions of destination countries results in a disproportionate distribution of health care workers to destination countries. This inequality is an issue of distributive justice, in which the policies and programs of destination countries exist as a pull for foreign health care workers to emigrate. Source countries have not received any remuneration for the losses in human and social capital experienced, thus destination countries are obligated to rectify these losses.

The international community has taken an important step in adopting the WHO Global Code to tackle worker shortages in LMICs by acknowledging that ethical norms must be used to guide cooperation on the issue of the migration of health care workers. The code has been ineffective though because of its non-binding nature and lack of incentives to guide destination countries to adopt national policy changes consistent with the code.12 When asked about the impact of the code, a Sudanese official remarked that, “as far as the WHO Code is voluntary and as far as beneficiary countries in the region do not have media or civil groups pressures, they will not be part of this code, I do not think there is hope! ” 2 The WHO must employ pressure through the media to mobilize national civil groups as a tactic to prompt destination countries to employ policy changes that address these countries’ roles as passive recruiters of foreign health care workers.2

Figure 1. Expatriation Rate of Doctors8 See OECD database.

Table 1. Global Health Workforce by Density6 Click to see table.

Table 2. Specific Ethical Challenges in the Medical Brain Drain9 Click to see table.

drain. (2014, March 05). Retrieved April 15, 2018, from https://openborders.info/brain-drain/
Abuagla, A., & Badr, E. (2016). Challenges to implementation of the WHO Global Code of Practice on International Recruitment of Health Personnel: The case of Sudan. Human Resources for Health, 14(S1). doi:10.1186/s12960-016-0117-8
H. (2008, September 01). Adding insult to injury: The healthcare brain drain. Retrieved April 15, 2018, from http://jme.bmj.com/content/34/9/684#ref-5
Adeloye, D., David, R. A., Olaogun, A. A., Auta, A., Adesokan, A., Gadanya, M., . . . Iseolorunkanmi, A. (2017, May 12). Health workforce and governance: The crisis in Nigeria. Retrieved April 15, 2018, from https://human-resources-health.biomedcentral.com/articles/10.1186/s12960-017-0205-4
Ethics and policy of medical brain drain: A review. (n.d.). Retrieved April 15, 2018, from https://smw.ch/article/doi/smw.2013.13845#5fc19d85b9d38250521c4d212ba358f0d7e9232f
Serour, G. I. (2009, June 16). Healthcare workers and the brain drain. Retrieved April 15, 2018, from https://obgyn.onlinelibrary.wiley.com/doi/full/10.1016/j.ijgo.2009.03.035
Misau, Y. A., Al-Sadat, N., & Gerei, A. B. (2010). Brain-drain and health care delivery in developing countries. Journal of Public Health in Africa,1(1). doi:10.4081/jphia.2010.e6
Database on Immigrants in OECD and non-OECD Countries: DIOC. (n.d.). Retrieved April 15, 2018, from http://www.oecd.org/els/mig/dioc.htm
Aluttis, C., Bishaw, T., & Frank, M. W. (2014). The workforce for health in a globalized context – global shortages and international migration. Global Health Action,7(1), 23611. doi:10.3402/gha.v7.23611
Yuksekdag, Y. (2017, February 21). Health Without Care? Vulnerability, Medical Brain Drain, and Health Worker Responsibilities in Underserved Contexts. Retrieved April 15, 2018, from https://link.springer.com/article/10.1007/s10728-017-0342-x
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Haidt, J. (2012). The righteous mind: Why good people are divided by politics and religion. London: Penguin Books.
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Is the Orphan Drug Industry the Proper Scapegoat for Unethical Research Funding?

Michael Menconi — 2019-07-07

The mainstream media and general public have expressed frustration in recent months with the confluence of capitalism and the pharmaceutical research and development enterprise. Outrage over arbitrary 1000 percent price hikes for lifesaving drugs like the EpiPen and widespread attribution of moral culpability for the opioid crisis have proven to be enormous outrage-generating controversies for Big Pharma. These headlines amass views, clicks, and social media activism on a massive scale—all portraying pharmaceutical companies as greedy and villainous adversaries. Camouflaged beneath this understandable outrage lies yet another ethically problematic matter, albeit significantly more complicated—the use of federal research dollars, tax incentives, and policy loopholes to study and develop highly specialized “orphan drugs” that benefit a select few while commanding some of the highest prices ever recorded in the history of the pharmaceutical industry.

Federal motivations for stimulating orphan drug development were “beneficent”—to co-opt a popular phrase prevalent in the contemporary bioethics vernacular. Orphan drugs are specifically developed for rare diseases that affect less than 200,000 people. Historically, most pharmaceutical companies avoided researching treatments for rare diseases as sales would be limited to the few patients with the disease, thus impeding profitability. Today, most rare disease research uses federal research dollars in a variety of forms, and the FDA closely coordinates with pharmaceutical companies through its Office of Orphan Products Development (OOPD) [1].

In order to stimulate orphan drug research, the OOPD offers tax incentives, special patent and marketing rights protections, and clinical research subsidies to pharmaceutical companies willing to undertake orphan drug projects. According to almost all conventional health policy metrics, the legislative instigator of these federal orphan drug policies—the Orphan Drug Act of 1983—continues to successfully fulfill its mission. Prior to 1983, only 10 orphan drugs were approved. Today, the number exceeds 400 [2].

To the superficial public eye, these figures are universally encouraging. Effective treatments are efficiently developed for rare diseases that would otherwise be overlooked while patients reap the clinical rewards of cutting-edge scientific research. Furthermore, one would expect that the millions in government subsidies and tax incentives approved by the FDA for any given orphan drug project would allow drug companies to offer these lifesaving treatments at a minimal, affordable cost. Soliris, a lifesaving orphan drug developed to treat the rare blood disorder paroxysmal nocturnal hemoglobinura (PNH), strongly rejects this assumption. While Soliris is not a curative treatment, it inhibits the lethal physiological process that characterizes PNH—the rapid and uncontrolled death of red blood cells. Consequently, PNH patients require the treatment for life at the hefty cost of $500,000 per year [3].

Alexion, the boutique pharmaceutical company that produced Soliris, reported $6 billion in profits in just eight years, generated from both public and private health insurance reimbursements [4]. Although patients have not born the financial burden of this ultra-specialized treatment thus far, health economists concede these prices are unsustainable [5]. The price of Soliris is hardly an anomaly. As of 2016, the average orphan drug cost per patient exceeded $140,000 annually—over six times the cost of conventional pharmaceutical therapies [6]. Equally alarming is the absence of laws or policies that require orphan drug companies to publicly disclose their drug pricing strategies. Persistent transparency requests from media and advocacy groups have failed to yield a response.

This orphan drug monopoly—aided with federally established financial incentives and regulatory shortcuts—presents a plethora of bioethical concerns that are further exacerbated as drug prices continue to soar without regulation. Intimate and liberally-regulated orphan drug trials are characterized by small sample sizes (often less than 1/3 of the average size of non-orphan trials), truncated study lengths, and diminished FDA regulatory requirements and oversight [7]. All of these attributes are cost-saving. When combined with government-supported financial incentives, serious doubts are raised about whether exorbitant orphan drug costs can be reasonably justified. Given the comparably miniscule patient population that benefits from these therapies, the exponential rise of orphan drug prices, and the refusal of pharma companies to be transparent with corporate profits and pricing, a comprehensive bioethical critique of the orphan drug research industry is warranted.

Orphan drug research is blatantly unjust. Suppose this research was completed in a financially responsible manner with drugs marketed at a reasonable, accessible price. Would society approve of the allocation of millions in federal funds for a treatment that only benefits a few thousand people? The FDA is inadequately equipped to shoulder these morally complex decisions. As public health experts and health economists recently opined in the Orphanet Journal of Rare Diseases, “the dearth of information on the overall costs of rare diseases prior to patients gaining access to orphan drugs makes it challenging to assess their cost-effectiveness” [8]. Until further empirical research supports the efficacy of the current orphan drug research and development paradigm, claims that orphan drug research falls within the moral parameters of distributive justice will remain grossly unsupported.

Furthermore, uninsured patients are simply unable to afford lifesaving orphan drugs. Orphan drugs cost patients on average 5.5 times more than non-orphan products [9]. While a combination of private and public insurance programs largely cover orphan drugs for insured patients, this practice is approaching its unfortunate end. As the exponential increase in the number of available orphan drugs continues, public and private insurance companies will begin capping orphan drug reimbursement. Due to the routine six-figure price tags, even a small percentage of the cost left for out-of-pocket pay would yield disastrous implications for drug accessibility. Instantaneously, orphan drug acquisition would be exclusively correlated to socioeconomic status. This would ensure the benefits of federally subsidized orphan drug research are only accessible to the wealthy, despite the fact drug production was partly financed by American taxpayers. These consequent inequalities are ethically impermissible.

Pharma industry loyalists continue to argue that orphan drug research and development costs are substantial enough to justify astronomical prices for final FDA-approved products. However, the ubiquitous secrecy encompassing orphan drug price strategy suggests otherwise. Researchers have estimated the R&D cost of an orphan drug is around the 27 percent of the R&D cost of conventional pharmaceutical therapies [10]. Pharma companies also insist that the number of potential patients – customers – is limited due to its sole application for rare diseases. This is perhaps Big Pharma’s most valid assertion. Orphan drugs are specifically envisioned for rare disease, which by definition affects 200,000 patients or less. However, if 200,000 patients requiring Soliris pay the drug’s price of $500,000 annually for a decade, the orphan drug will have generated $1 trillion in revenue. The earning potential for orphan drugs is difficult to overstate. It is also possible orphan drugs may hold therapeutic applications for diseases or ailments that are unrelated to the rare disease for which the drug was intended. Although impossible to predict, the colorful history of pharmaceutical research reveals that unexpected applications of drugs are both plausible and impressively lucrative.

Evidently, the perennially impermeable ethos of scientific research—traditionally characterized by the noble pursuit of knowledge for society’s advancement—possesses newly exposed ethical vulnerabilities in the realm of orphan drug research. Morally misguided and ill-regulated market forces currently dominating the orphan drug research industry are to blame. In a niche industry where a plethora of justice concerns endure, a comprehensive and transparent analysis of orphan drug economics must be completed prior to any further disbursement of federal research incentives. The contemporary reality of rapidly advancing medicine and biotechnology in the context of finite research dollars necessitates a prioritization of ethical responsibility. For the foreseeable future, the justice-informed course of action must embrace the reallocation of valuable research funding towards treatments that hold the prospect of benefiting expansive patient populations in lieu of micro-populations chosen for their collective potential as high-return investments.

Works Cited

1. National Institutes of Health. “FAQs About Rare Diseases.” Genetic and Rare Diseases Information Center. https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases.

2. NIH, Genetic and Rare Diseases Information Center.

3. Crowe, Kelly. “How Pharmaceutical Company Alexion Set the Price of the World’s Most Expensive Drug.” CBC/Radio-Canada. June 25, 2015. https://www.cbc.ca/news/health/how-pharmaceutical-company-alexion-set-the-price-of-the-world-s-most-expensive-drug-1.3125251.

4. Kelly, CBC/Radio-Canada.

5. Berdud, Mikel, Michael Drummond, and Adrian Towse. “Establishing a Reasonable Price for an Orphan Drug.” Office of Health Economics, (July 2018).

6. Evaluate Ltd. “EvaluatePharma® Orphan Drug Report 2017” 4 (February 2017). http://info.evaluategroup.com/rs/607-YGS-364/images/EPOD17.pdf.

7. Evaluate Ltd., Orphan Drug Report 2017.

8. Drummond, Michael, and Adrian Towse. “Is Rate of Return Pricing a Useful Approach When Value-Based Pricing Is Not Appropriate?” The European Journal of Health Economics, (February 15, 2019). https://doi.org/10.1007/s10198-019-01032-7.

9. Drummond, The European Journal of Health Economics.

10. Rodriguez-Monguio, R., T. Spargo, and E. Seoane-Vazquez. “Ethical Imperatives of Timely Access to Orphan Drugs: Is Possible to Reconcile Economic Incentives and Patients’ Health Needs?” Orphanet Journal of Rare Diseases, no. 1 (December 2017). https://doi.org/10.1186/s13023-016-0551-7.

Bioethics Poetry - "What writing is"

Andrew Burlile — 2019-07-08

Do you experience intense feelings of doom? Overwhelming emotions? Racing thoughts? If so then you may be eligible to participate in a two-week study on anti-anxiety medication overseen by

The words are slight. Sans-serif. Nonthreatening, a dark grey font nearly indistinguishable from black printed on an off-white banner, placed carefully just above commuters’ heads on the T. I glance back from the ad to the other passengers. They pack closely together, standing, or sitting, either staring out the window or oscillating between their phone or book to the outside and back. A few sway with the car’s gravity. I sway with them.

The T stops. We cluster to let more on. I felt bad for the woman who stood under my arm; I had showered, but I hadn’t washed my shirt in a week. The car jolts on. We all watch the trees roll up behind concrete as we descend into Kenmore. Underground the B-line sheds brownstone for a bright blackness. All you have to look at is your phone, or the darkness outside the window which reflects your own image. Or the ads.

I hadn’t seen this one before. I first noticed it when I got on in Allston, where, next to me, with me, pushing into the trolley, others held up their wallets and flashed their Charlie Cards and I did the same knowing full well I didn’t have the fare if the driver were to ask me to come to the front.

The ad continued. For participation you may be eligible for a cash compensation up to $300.

Up to. What made someone eligible for the full amount? To what would you need to agree?

When I worked as a linguistic researcher at Virginia Tech, I took an IRB certification course which forbade unethical practices, such as offering financial compensation that was “undeniable.” I make $11 hour. My net pay comes to perhaps $400 biweekly. Not including tips.

The same year I earned IRB certification a friend of mine at another university, studying in one of the country’s top biomedical programs, called to ask my opinion about sperm donation. When I pressed him for a reason he responded that it’s “more enjoyable than donating plasma.”

The B-line ends at Park Street. It doesn’t venture into the financial district. You won’t see anyone wearing suits on the B-line unless they got on at Hynes (having taken from Harvard the #1 bus – one: superlative, generative, capital). The Green line intersects at Park Street with the Red Line, which veins all the way from Alewife to Braintree. For $2.25 you could observe the creep of gentrification from north to south, east to west.

Was this ad for me? Because it felt “undeniable.” $300 was grocery money for three months. Or it was a fifth of one month’s rent.

I did not come to Boston impoverished. I came with savings. I came, I thought, ready for its challenges. But coming to Boston is like riding the B-line. You get on in Allston, riding through the gentrified grit of performative punk and you feel empowered by a diversity which feels comfortable to a white southern boy like you, because it’s diversity in moderation. The Orthodox Jewish neighborhood and the Orthodox Russian butcher, the Korean barbecues and three Starbucks are all a type of familiarity which affords a comfortable participation in gentrification under another umbrella term: “just getting by.” I joke at work that I’m not wealthy enough to have ethics. I can’t buy reusable bags. I moonlight in my head that I write a polemic about the microplastics found in oysters. Op-eds for the Globe. Which lead to a book deal at Knopf. A PEN/Faulkner. Eventually a National Book Award. At the same time I imagine writing this piece I also imagine eating the oyster. Relishing the brine. I like to know my oysters were bottom-feeders.

But then the B-line slips out of Allston and into Boston, past the theatres of BU, by the sanctuary of the MFA you were not accepted into. The ramen place you’ve wanted to try but can’t afford. And then you descend into that lambent darkness.

When the windows go dark, I won’t lie, I look at the reflections of others. I see others glance above my head. They linger. I linger on them. How they turn their whole bodies away from the banner. I know they’re also from Allston by how they linger, as if they’re waiting for the change of stoplight to cross.

After ending the call with my friend, who ultimately backed out of donating sperm, I looked up clinics nearby. One of them offered up to $1000 a month for regular donations.

Up to. A phrase that indicates potential, but with no promise of achieving it. It’s the American Dream in a word. It’s also an idiom; what are you up to? (Oh, just getting by.) Lastly it’s an implication of collusion. Up to something. The suspicion of artifice, of subterfuge, of clever misdirection. The very same sleight-of-hand I used to design the linguistic research project. IRB protocol permitted outright equivocation to the participant so long as they were not harmed. And so long as the compensation was never undeniable.

What is the threshold at which an offer becomes undeniable? At what price are we willing to sell our neurochemistry? What risks are we willing to incur? By advertising on the T – to those who can afford Allston, but suffer it – the ad suggests those who can be bought are coming from Allston, from Roxbury, from Forest Hills. And that researchers know how to coerce them.

Is that what research is? The practice of displacing your own curiosity on the bodies of others. A type of voyeurism that is hypothetically consensual. Another brand of gentrification. Pretending to look out the window to look back at those around you.

I write down the number. At the bottom of the ad, in a crimson banner, Harvard Medical printed their seal: VE RI TAS.

Photo by Thought Catalog on Unsplash

The Ethics of Using De-Identified Medical Data for Research without Informed Consent

Art Caplan — 2019-11-14

Introduction

A recent publication by Ludvigsson et al [1] attempted to explain and justify the nature of health registries in Nordic countries. These registries contain de-identified medical information from each of the individuals who interact with the nationally-run healthcare system and are used for research and quality improvement purposes. According to current laws in these countries, individual informed consent is generally not required for large-scale, registry-based studies that are deemed ethical by an ethics committee (EC). In Nordic countries, these regional ethics committees (RECs) essentially perform the role of IRBs for human subjects research including clinical research but have less formal regulation to guide their practice [2]. As this holds similarities to laws in other countries such as the United States, this is an issue of global relevance. Ludvigsson et al. made several philosophical arguments to justify the option of informed consent, including the social contract theory of government, the ability of a representative ethics committee to serve as a proxy for individual interests, the principle of social justice, and the principle of utilitarianism.

Here, we present an alternative point of view to these arguments made in support of the use of de-identified medical data in the form of health registries for research purposes without informed consent [3]. Though the argument Ludvigsson et al. puts forth specifically focuses on national health registries in Nordic countries, regulations in the US also permit the use of de-identified health information in research without informed consent. As such, the ethicality of using de-identified medical data for research studies without informed consent is relevant both in the US and abroad.

Argument and Response

The first argument posited by Ludvigsson et al involves the social contract theory of government. This theory states that individuals who are part of a given society have a set of moral obligations according to a contract, or agreement, between the individuals of that society which allows the society as an entity to exist. By choosing to remain part of a society, individuals are therefore agreeing to these obligations. In the case of Ludvigsson et al’s argument, individuals have an assumed agreement to contribute their personal data for research in exchange for receiving free or reduced-cost healthcare from the state. Consequently, participation is compulsory and informed consent is not necessary. This parallels other government requirements that aim to support society in exchange for the benefits of living in the society, such as drafting individuals to serve in the armed forces and requiring individuals to pay taxes.

One practical caveat to this argument involves individuals who obtain private health insurance in the US. In this case, an argument could be made that because these individuals’ healthcare is not paid for by government-funded insurance such as Medicare or Medicaid, these individuals are not subject to the same agreement to contribute their data as those whose healthcare is provided by the state. A similar argument could be made for relatives of individuals who reside in a different country. In this case, certain medical data about an individual who resides in a given country may be used to infer medical information about the individual’s family members or relatives. Examples of this may include hereditary medical conditions or individual DNA sequence data. If the individual’s information is then used in a research study, this could also lead to indirect inclusion of relatives’ medical data in that research study, yielding potential violations of the relatives because they are not subject to the same social contract theory. Furthermore, their information is being used in research studies without their informed consent.

In each of these cases, however, Ludvigsson et al’s argument falls short if we consider individual privacy as a fundamental human right. In this case, a government or other agency’s use of personal data without permission represents a violation of this right, whereas requiring individuals to serve in the armed forces or pay taxes does not. A counterargument may posit that because the medical data stored in these registries is “de-identified” and thus cannot be used to uniquely identify an individual, storage and use of this data without consent does not violate an individual’s right to privacy. While this argument appears sound, there are two important technical and philosophical considerations: (1) whether an individual’s medical data can be truly de-identified, and (2) whether new technologies in the future might enable re-identification of data that was believed to be de-identified. For instance, given that DNA sequence data is unique for each individual, creating a registry of this data on its own could conceivably be linked back to specific individuals in the future, even if this cannot be done at present. Furthermore, because there is greater similarity between genome sequence data of closely related family members, family trees could conceivably be created using the genome sequence data of individuals in a population-level registry, leading to potential identification of the genome sequence data of specific families that are outliers in some way. A similar technique could be applied to identify minority groups with known patterns in their genome sequence data. Combining these data analyses with other information such as census reports or demographic surveys could enable researchers to further identify specific groups and individuals from “de-identified” data, leading to privacy violations. From a philosophical standpoint, if we cannot truly de-identify medical data while retaining sufficient accuracy to conduct scientifically valid research studies, any use of data for research studies could potentially be used to personally identify individuals and thus would require informed consent in order to protect privacy . As a result, Ludvigsson et al’s argument that individuals have an assumed agreement to contribute their personal data for research in exchange for free or reduced-cost government healthcare falls short if we value privacy rights and acknowledge that individual medical data cannot be truly de-identified.

A second argument posed by Ludvigsson et al. stipulates that research study approval from an ethics committee may replace individual informed consent regarding the use of medical data in a national registry because ethics committees are believed to represent the general public. While this argument is plausible in cases where there is unanimous public agreement regarding use of registry medical data for clinical research, it falls short when there is disagreement. In such cases, an ethics committee’s blanket statement concerning medical data in a registry that includes data from individuals who do not agree with the ethics committee’s position would violate their autonomy. Therefore, preserving individual autonomy would require us to ask each individual whether he/she approves of the use of his/her data for a particular research study, which is essentially informed consent. As such, Ludvigsson et al’s argument that ethics committee approval may replace individual informed consent for the use of medical registry data in the context of clinical research only holds weight if public opinion surrounding a particular study is unanimous.

A third argument posed by Ludvigsson et al. involves the principle of social justice. Here, social justice connotes a fair distribution of wealth, opportunity, and social privileges among the members of a society. The argument is as follows: Informed consent may be especially challenging to obtain from high-risk populations. Informed consent protocol for a given research study would therefore exclude these populations, resulting in selection bias and publication of research findings that may not be relevant to these populations. The unequal publishing of research findings relevant to these populations could lead to further marginalization of these populations, further perpetuating social inequalities. This represents a violation of the principle of social justice. A potential counterargument involves violation of individual autonomy in research studies performed without informed consent. This may represent a violation of social justice if informed consent is obtained from some individuals but not others if we consider the opportunity to exercise one’s individual autonomy through the informed consent process to be a social privilege. However, this counterargument does not apply if informed consent is not obtained.

A fourth argument posed by Ludvigsson et al is a utilitarian argument. In this case, utilitarianism refers to the principle of maximizing utility, or producing the greatest benefit to the greatest number of individuals. Specifically, requiring informed consent would drastically reduce the number of study participants and thus statistical power of national population-level studies. Furthermore, the cost required to obtain consent from millions of individuals as part of a national health data registry would be exorbitant. Because this research has the potential to benefit many of the individuals whose data are being used, requiring informed consent would conflict with the principle of utilitarianism because it would prevent such research from being conducted. One counterargument here involves the nature of research. Given the inherent uncertainty of research studies, it is possible that the results of large-scale research studies using national registries would not yield results that benefit many of the individuals whose data was used Additionally, while conducting large-scale research studies may maximize benefits to society, it may not maximize benefits to the individuals whose data was used to conduct these studies. If there is a greater risk of harm than benefit to some individuals and we choose to conduct the research without allowing these individuals to choose whether their data is used, we set a dangerous precedent that justifies harming a few individuals in order to benefit society. This also represents a potential violation of the research ethics principle of favorable risk-benefit ratio, which states that the potential benefits of a research study should be proportional to or outweigh the potential risks, if we assume that this principle should apply to each individual participant as well as to society as a whole. One possible response to this objection is that if each research study must be approved by an ethics committee, it would be this committee’s responsibility to ensure that the research would not result in harm to a few individuals in order to benefit the many. Thus, Ludvigsson et al’s argument is sound if we value the principle of utilitarianism over individual autonomy and assume that large-scale research studies are likely to confer the maximum benefits to society. Indeed, from a utilitarian point of view the potential harms to the people whose data are used are quite low, particularly when protections are in place, while the potential benefits to society are quite large. This tends to tip the scale in favor of utilitarian-based violations of privacy rights [4].

Discussion and Concluding Remarks

Ludvigsson et al’s arguments regarding social justice and utilitarianism appear to be sound. However, Ludvigsson et al’s arguments regarding the social contract theory of government and ethics committees serving as a substitute for individual informed consent appear to be flawed. In order to determine whether use of de-identified medical data for research purposes is ethical in the absence of informed consent, we must consider whether the principles of social justice and utilitarianism supplant individual autonomy.

Several additional considerations are warranted in the context of de-identified individual medical data for research studies. These include potential benefits to data subjects as a result of de-identification of data, additional tools that can be used to protect de-identified data from the risk of individual privacy violations in addition to or instead of informed consent, and protection of both de-identified and personally identifiable research data from unauthorized access and use. Specific additional tools include technical tools to assess the level of de-identification of data and statistical risk of re-identification, additional legal regulations on the use of individual medical data to prevent potential consequences of privacy violations such as employment discrimination or insurance discrimination, more granular access controls for researchers and research groups working with potentially re-identifiable data sets, and increased education and awareness of best practices for research personnel working with potentially re-identifiable data. Each of these considerations will now be discussed.

The first additional consideration includes potential benefits to research subjects as a result of de-identification of data. Even if there is a risk that the data cannot be completely de-identified, using de-identified data as opposed to personally identifiable data in research studies, whether these studies involve informed consent or not, reduces the risk of individual privacy violations if there is a data breach. While data may need to remain individually identifiable in order to perform certain analyses in some research studies, individuals should be made aware of the level of de-identification of their data as part of the informed consent process and the data should be kept as de-identified as possible to minimize participant risk. In particular, given that there are multiple ways to de-identify data and de-identification exists along a spectrum [5], explaining what steps, if any, will be taken to de-identify a participant’s data and the associated risks of re-identification as part of the informed consent process for a given research study will enable participants to make a truly informed decision regarding use of their data in a given research study.

The second important consideration involves whether informed consent is the only tool that can be used to protect “de-identified” data from the risk of individual privacy violations. Clearly, requiring a participant to consent to use of his/her data in a research study protects against potential privacy violations because the participant has given permission for his/her data to be used in this manner. If the participant has not given informed consent, however, whether or not a given use of the participant’s data as part of a research study constitutes a privacy violation depends on whether the data may be used to re-identify the participant. As such, developing technical tools to better assess the re-identifiability of a given set of data, both alone and in conjunction with other information, may help assess the risk to individual privacy of using a given set of data as part of a research study. Legal regulations could serve as another potential tool to protect against privacy violations. For instance, laws preventing discrimination for employment or insurance coverage on the basis of individual health data such as genetic information could protect individuals from unauthorized use of their health data by employers or insurance companies in the event that their “de-identified” data is able to be re-identified. Current laws such as the Genetic Information Nondiscrimination Act of 2008 (GINA) already exist to protect against genetic discrimination from employers and for health insurance coverage [6]. Another potential tool involves restricting access of specific research groups or research personnel to different data sets to reduce the likelihood of a single group or researcher obtaining complementary data sets that could be used to re-identify individual study participants. This may be analogous to conventional checks and balances used across large organizations and in government to prevent any single individual from wielding too much power. Finally, increased education of research personnel regarding the risks of working with de-identified data and a set of best practices for storing and analyzing this data may also reduce the risk of inadvertent data breaches or re-identification. Thus, while informed consent is a valuable tool to protect de-identified data from posing a risk to individual privacy, it is not the only tool that can be used for this purpose.

The third consideration involves protection of research data, both “de-identified” and personally identifiable, from unauthorized access. Given that de-identified data can be re-identified and the likelihood of re-identification depends on the ethics of the entity analyzing the data and the other data the entity has access to, maintaining controlled access to de-identified data is crucial. Determining who is able to access this data requires both technical safeguards and approval from an ethics committee regarding which research studies and research groups are permitted to access and use a given set of data, along with how the data may be used as part of a given research study or by a particular research group.

References

[1] Jonas F Ludvigsson et al., “Ethical Aspects of Registry-Based Research in the Nordic Countries,” Clinical Epidemiology 7 (November 23, 2015): 491–508, https://doi.org/10.2147/CLEP.S90589.

[2] R. Froud et al., “Research Ethics Oversight in Norway: Structure, Function, and Challenges,” BMC Health Services Research 19 (January 10, 2019), https://doi.org/10.1186/s12913-018-3816-0.

[3] “Privacy and Security Conditions Required for Research Using EHR and Other Electronic Health Data,” ASPE, November 23, 2015, https://aspe.hhs.gov/report/feasibility-using-electronic-health-data-research-small-populations/privacy-and-security-conditions-required-research-using-ehr-and-other-electronic-health-data.

[4] Luke Gelinas, Alan Wertheimer, and Franklin G. Miller, “When and Why Is Research without Consent Permissible?,” The Hastings Center Report 46, no. 2 (April 2016): 35–43, https://doi.org/10.1002/hast.548.

[5] Mark A. Rothstein, “Is Deidentification Sufficient to Protect Health Privacy in Research?,” The American Journal of Bioethics : AJOB 10, no. 9 (September 2010): 3–11, https://doi.org/10.1080/15265161.2010.494215.

[6] “The Genetic Information Nondiscrimination Act of 2008,” National Human Genome Research Institute (NHGRI), accessed December 16, 2018, https://www.genome.gov/27568492/the-genetic-information-nondiscrimination-act-of-2008/.

(Mis)treating Substance Use Disorder With Prison

Kaitlin Puccio — 2019-11-19

I. Introduction

It is largely unethical to sentence individuals who are addicted to drugs to prison. While substance use can be a crime, it must be treated differently from other crimes because addiction is a psychiatric disorder. Prisons are penal institutions. Legitimate goals of penal sanctions include retribution, deterrence, rehabilitation, and incapacitation.[i] Most of these goals do not speak to those with substance use disorder, and incarceration may be counterproductive given the wide availability of drugs and feeble rehabilitation efforts in prison. Further, it may be the case that substance use disorder impairs an addict’s autonomy, calling into question his criminal culpability. Our understanding of substance use disorder has evolved and our prison sentencing practices must do the same.

This paper will first provide background on substance use disorder as a psychiatric disorder. Then, the need to focus on rehabilitating rather than punishing those with substance use disorder who commit crimes will be explored. Finally, this paper will address whether an individual with substance use disorder can be considered culpable for any crime—regardless of severity—and whether that individual’s autonomy is impaired due to his addiction. I conclude that culpability should depend on whether the serious crime would have occurred in the absence of the drug addiction. In most cases, it is unethical to sentence an individual with substance use disorder to prison where other options such as home confinement are available.

II. Background

The fifth and most recent edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5)—published nearly twenty years after the previous edition was published in 1994—includes a section on substance use disorder.[ii] In prior editions, substance abuse and substance dependence were listed as separate categories. Abuse was conceptualized as “mild or early phase” (dangerous substance use) and dependence as the “more serious manifestation” (regular substance use).[iii] The recently combined category of substance use disorder is measured on a spectrum of severity, reflecting two decades of clinical research. This is a significant development, because it recognizes that what was once considered “substance abuse” is not simply a “mild” vice, but a serious disorder. This new understanding warrants changes to the existing penal system in the United States as applied to those who are addicted to drugs.

III. Analysis

a. Punishment versus rehabilitation

Given our recent understanding of the genetic components underlying addiction, it is clear that substance use disorder requires treatment rather than punishment. The three most relevant goals of penal sanctions are deterrence, rehabilitation, and incapacitation. Deterrence is the idea that mandatory minimum sentences will prevent addicts from violating drug laws because the threatened loss of freedom outweighs the perceived benefits (from the addict’s perspective) of drug use. If deterrence were effective, states with higher rates of incarceration for drug crimes would have lower rates of drug use.[iv] This is not the case. Further, shorter sentences have not led to higher recidivism rates.[v] The correlation between prison sentences and drug use is thin.

Prisons in the United States have a more punitive than rehabilitative focus. Over 75 percent of inmates released from prison are reincarcerated within five years due to the lack of rehabilitative programs, which include educational and reintegration programs.[vi] Rehabilitation programs in prison targeted at substance use disorder are utilized by only 40-50 percent of the prison population with drug addictions. Despite the availability of these programs in most prisons, drugs are also widely available in prisons. [vii] Those with substance use disorder are less likely to be able to resist using drugs when exposed to them; this is now acknowledged as a symptom of the disorder as opposed to a weakness of character.[viii] Confining an addict to an environment that challenges his self-control is not conducive to his successful rehabilitation.

b. Easy cases

Incapacitation embodies the idea that incarcerating drug offenders increases public safety. Here the analysis splits into two paths: the easy cases and the hard cases. First, I will address the easy cases. While drug use is itself a crime and often leads to other crimes, petty crimes in conjunction with drug use must be considered differently than more serious crimes. Lesser crimes such as shoplifting often co-occur with drug use (for example, a heroin addict stealing needles). In these cases, it is likely that but for the addiction, the crime would not have occurred. Drug use alone and drug use in conjunction with petty crimes should not involve prison time because there are minimal associated public safety concerns. Other penal options that achieve the goals of incapacitation, retribution, and deterrence include home confinement and fines, in addition to the completion of a court-ordered drug treatment program that achieves the penal goal of rehabilitation.

For example, German prisons emphasize reintegration rather than punishment; the conditions of confinement are not part of the punishment. Rather, the punishment is “the incarceration, the imprisonment itself…the loss of freedom, that’s it.” [ix] Prisoners—including those who have committed violent crimes—have the keys to their own private cells, complete with a private bathroom. They can decorate how they wish and play darts in common areas throughout what resembles a college campus. The conditions are luxurious compared to prison conditions in the United States, yet the recidivism rate is lower.[x] The loss of freedom is the key, which acts as both a punishment and a deterrent.

Similarly, in the case of mandatory drug treatment programs that we might impose on those with substance use disorder instead of prison, the loss of freedom is the punishment: an addict is removed from his family and forced into a rehabilitation program. Extracting him from his environment is a critical step as well, because it is important to extinguish environmental cues when treating substance use disorder. For example, an individual may associate heroin with the people he is with or the apartment he is in when using the drug. Environmental experiences can trigger a drug craving. Such environmental cues are a type of memory. It would be difficult to extinguish such cues in a prison environment where drugs are rampant and new cues are able to evolve before the individual has been treated for addiction.

Further, drug use often co-occurs with other psychiatric disorders like PTSD. Punishing a self-medicating, traumatized individual with punitive action that may contribute to additional trauma is reinforcing. For example, a female victim of domestic violence and sexual abuse may use drugs to alleviate the stress of her situation. If she is imprisoned for drug possession, sexual assault and violence while incarcerated, and the presence of male guards in a position of authority, may add to her trauma.[xi] A focus on rehabilitation rather than punishment speaks more to the needs of those with substance use disorder and more successfully achieves the apparent aims of the penal system.

c. Difficult cases

There are more difficult cases where drug use co-occurs with more serious crimes such as murder. The balance in these cases weighs more heavily in favor of prison for incapacitation purposes due to concerns over public safety. However, the rehabilitative goal should not be disregarded simply because prison is appropriate. To move beyond the challenges that a prison environment presents for those with substance use disorder, the conditions of confinement must improve. An individual who is released from prison after a long sentence may be more difficult to treat due to what is recognized among psychologists and criminologists as “post-incarceration syndrome.”[xii] Researchers at Vrije Universiteit Amsterdam used neuropsychological tests to show that even after a short incarceration, prisoners demonstrated increased impulsivity and decreased attentional control, and concluded that “released prisoners may be less capable of living a lawful life than they were prior to their imprisonment.”[xiii] Compounding this with substance use disorder that is unlikely to have been treated in prison may leave addicts prone to even greater dependence on drugs than before entering prison.

d. Autonomy and culpability

One remaining question is whether an individual with substance use disorder can be said to be culpable for any crime—regardless of severity—if his autonomy is impaired due to his addiction. Punishment for crimes committed by those with other psychiatric disorders may provide some clarity.

Since 1955, the number of patients housed in psychiatric institutions has declined by 95 percent.[xiv] This is not due to a decline in the number of people with psychiatric illnesses, but because psychiatric hospitals have largely gone out of existence. Many of the mentally ill ended up homeless or in prison. Indeed, 15 percent of state prison inmates suffer from a psychotic disorder.[xv] Prior to this deinstitutionalization, an individual with schizophrenia, for example, who committed murder because voices in his head ordered him to do so would be sent to a psychiatric institution for both mental health care and incapacitation purposes. Now, this same individual would likely be incarcerated. Even though pleading insanity may reduce his sentence, prison conditions—for example, being placed in solitary confinement—may exacerbate this issue.[xvi]

Individuals with antisocial personality disorder (psychopaths and sociopaths) are treated differently in that the insanity defense does not apply.[xvii] On a spectrum, these individuals are the most culpable. Their behavior and lack of remorse does not fit the Model Penal Code test of insanity, where an “individual is not liable for criminal offenses if, when he or she committed the crime or crimes, the individual suffered from a mental disease or defect that resulted in the individual lacking the substantial capacity to appreciate the wrongfulness of his or her actions…”[xviii] Under this test, schizophrenics are less culpable because while they committed the crime, they suffered from volitional impairment. Those with substance use disorder suffer from a similar volitional impairment, though the insanity defense is not available to them. However, the availability of the insanity defense to a defendant does not determine culpability; volitional impairment, which provides the legal basis for the insanity defense, is the key.

The nervous system of an individual with substance use disorder reacts to drugs in a way that is reinforcing. All addictive drugs stimulate the release of dopamine in the nucleus accumbens. An individual may inherit an atypical response to opiates, for example, where the drug makes him feel euphoric and thus is highly reinforcing. By contrast, another individual who has been prescribed opiates after a traumatic physical injury may find that they don’t make him feel anything other than a decrease in pain—i.e. there is no feeling of euphoria, or “high.” The former has an inherited risk of developing substance use disorder. Even if he desires to stop using heroin, he may be unable to do so as a result of genetic or biological predispositions. He is stripped of his autonomy in this sense. Because of this volitional impairment, it is unethical to find him culpable for using drugs. His culpability with regard to other crimes may depend on whether he would have committed the crime if he did not suffer from substance use disorder.

IV. Conclusion

Research has shown that addiction is a psychiatric disorder. Although substance use can be a crime, it must be treated differently than other crimes. The current penal system in the United States focuses on punishment rather than rehabilitation. This does not speak to the needs of those with substance use disorder, and likely thwarts efforts at reintegrating prisoners into society. Without proper treatment, those with substance use disorder will likely continue to use drugs. Their genetic makeup leaves them vulnerable to addiction and threatens their autonomy. This loss of autonomy means that—like those who suffer from other psychiatric disorders and are volitionally impaired—they are not culpable for the crime of substance use. Cases in which drug use co-occurs with other crimes are more difficult, but an individual’s culpability should depend on whether the additional crime would have occurred in the absence of drug addiction. Even if an individual with substance use disorder is incarcerated for the purpose of incapacitation in the context of a serious crime, the institution to which he is sentenced must provide proper rehabilitation. In most cases, it is unethical to sentence an individual with substance use disorder to prison where other options are available.

[i] Graham v. Florida, 130 S.Ct. 2011 at 2012 (2010).

[ii] American Psychiatric Association, Diagnostic and Statistic Manual of Mental Disorders, 5th Edition, “Substance Use Disorder”

[iii] See generally Hasin, Deborah S. et. al, Am. J. Psychiatry, “DSM-5 Criteria for Substance Use Disorders: Recommendations and Rationale” (2013), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3767415/

[iv] Pew Trusts, “More Imprisonment Does Not Reduce State Drug Problems,” March 8, 2018, https://www.pewtrusts.org/en/research-and-analysis/issue-briefs/2018/03/more-imprisonment-does-not-reduce-state-drug-problems

[v] U.S. Sentencing Commission, “U.S. Sentencing Commission Votes Unanimously to Apply Amendment Retroactively for Crack Cocaine Offenses,” news release, Dec. 11, 2007, http://www.ussc.gov/about/news/press-releases/december-11-2007; Kim Steven Hunt and Andrew Peterson, “Recidivism Among Offenders Receiving Retroactive Sentence Reductions: The 2007 Crack Cocaine Amendment” (2014), U.S. Sentencing Commission, http://www.ussc.gov/sites/default/files/pdf/research-and-publications/research-projects-and-surveys/miscellaneous/ 20140527_Recidivism_2007_Crack_Cocaine_Amendment.pdf.

[vi] University of Pennsylvania, Wharton Public Policy Initiative, “The Economic Impact of Prison Rehabilitation Programs,” August 17, 2017, https://publicpolicy.wharton.upenn.edu/live/news/2059-the-economic-impact-of-prison-rehabilitation/for-students/blog/news.php

[vii] Welsh-Huggins, Andrew, Associated Press, “Prison Staff in 2 States Treated for Exposure to Drugs,” August 29, 2018, https://www.usnews.com/news/best-states/ohio/articles/2018-08-29/report-prison-guards-inmates-treated-for-exposure

[viii] Hartney, Elizabeth, PhD, “A Guide to DSM 5 Criteria for Substance Use Disorders,” September 26, 2018, https://www.verywellmind.com/dsm-5-criteria-for-substance-use-disorders-21926

[ix] CBS 60 Minutes Presents: Behind Bars, https://www.cbsnews.com/news/60-minutes-presents-behind-bars-prison/

[x] The Marshall Project, “Prison Without Punishment,” September 25, 2015, https://www.themarshallproject.org/2015/09/25/prison-without-punishment

[xi] See also Hogenboom, Melissa, BBC, “Locked up and vulnerable: When prison makes things worse,” April 16, 2018, http://www.bbc.com/future/story/20180411-locked-up-and-vulnerable-when-prison-makes-things-worse, discussing how women who are victims of trauma are re-victimized by prison.

[xii] Jarrett, Christian, BBC, “How Prison Changes People,” May 1, 2018, http://www.bbc.com/future/story/20180430-the-unexpected-ways-prison-time-changes-people

[xiii] Id.

[xiv] Kozlowska, Hanna, The Atlantic,”Should the U.S. Bring Back Psychiatric Asylums,” January 27, 2015, https://www.theatlantic.com/health/archive/2015/01/should-the-us-bring-back-psychiatric-asylums/384838/

[xv] Id.

[xvi] Id.

[xvii] Cornell University Legal Information Institute, “Insanity defense,” https://www.law.cornell.edu/wex/insanity_defense

[xviii] Cornell University Legal Information Institute, “Model Penal Code Insanity Defense,” https://www.law.cornell.edu/wex/model_penal_code_insanity_defense