Bioethics Publications

  • Mitochondrial Replacement Therapy: How a Government for the People, Failed the People

    Jeffery Mark Sauer – Alumni

    University of Miami Law Review – November 7, 2018

    Despite having the potential to significantly reduce the passage of many lethal diseases and devastating birth defects, mitochondrial replacement therapy—a controversial medical procedure in which mitochondrial RNA from a healthy female replaces the mitochondrial RNA from the intended mother in vitro—will have no place in the United States anytime soon. Under the guise of purported safety concerns and ethical dilemmas, the Republican Congress used its “power of the purse” to halt any and all research furthering mitochondrial replacement therapy, notwithstanding the fact that many leaders in the medical community have advocated for further research. Several developed countries have already implemented limited applications of the procedure. However, as long as Congress continues to abuse its constitutional appropriations power in a manner inconsistent with the original intent of the framers, policies that can greatly benefit society as a whole will be sacrificed in the name of partisanship and narrow-mindedness.

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  • Are Obese Children Abused Children?

    Maura Priest – Student

    The Hastings Center – August 16, 2018

    In 2010, a South Carolina mother was taken to court when her fourteen‐year‐old son reached 555 pounds. An article on the story reported, “His mother, Jerri Gray, lost custody of her son and is being charged with criminal neglect. Gray is facing 15 years on two felony counts, the first U.S. felony case involving childhood obesity.” If the caretakers of obese children are negligent, then they are also morally and legally blameworthy. I want to suggest, however, that important ethical differences exist between negligent or abusive caretakers and the caretakers of obese children and that these differences ought to make a moral and legal difference. The distinctions are nuanced, and the ethical pictures in cases of abuse, neglect, and obesity are far from black and white. However, the various types of harm that children face from their caretakers should be placed in neither the same ethical nor the same legal category.

    When children are beaten or sexually molested, the justification for taking them out of the home is clear: the caretakers are violating the rights of their children. Similarly, with neglect, caretakers are failing to provide their children the necessities to which they are entitled. The central question that I want to address in this article is whether the actions (or inaction) of caretakers that allow a child to become obese are morally or practically analogous to physical abuse or neglect. Ultimately, I will argue that parenting that allows a child to become obese is so morally different from both abuse and neglect that it is best understood as falling outside these categories altogether. This conclusion has important moral, practical, and legal implications.

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  • Brain Injury and the Civil Right We Don’t Think About

    Joseph J. Fins – Faculty

    The New York Times – August 24, 2017

    “If we reconceived rehabilitation as education, no one would graduate after a six-week course of care. Instead, we would promote lifelong learning as a means to achieve a recovered life. If there is a legal obligation to educate the developing brain, should there not be a correlative responsibility to those whose brain are in a process of redevelopment and recovery?”

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  • 'I'm Willing To Try Anything': Compassionate Use Access To Experimental Drugs And The Misguided Mission Of Right-To-Try Laws

    Amy Scharf and Elizabeth Dzeng – Alumni

    Health Affairs – June 14, 2017

    Some patients facing death take drastic, or even desperate measures in order to prolong their lives. Such actions often include taking unapproved, investigational drugs. In the U.S., a program known as Compassionate Use, or Expanded Access, allows terminally ill patients who meet certain medical criteria to apply (through their physicians) to the Food and Drug Administration (FDA) and the drug manufacturers for access to drugs that are undergoing FDA clinical trials. At first blush, it may appear that there should be no legal, political, or ethical controversies surrounding the concept of expanded access. How can one possibly deny a dying patient even the slightest chance of prolonged life or recovery? Is there a side effect worse than certain death?

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  • I am a refugee, an immigrant and an American

    Bela Fishbeyn – Alumni

    San Francisco Chronicle – March 27, 2017

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  • Can Lay Community Advisors Improve the Clarity of Research Participant Recruitment Materials and Increase the Likelihood of Participation?

    Nora Jacobson – Faculty

    Research in Nursing & Health – March 24, 2017

    Despite decades of effort, lower income people and ethnic minorities continue to be underrepresented as participants in health research. A group of racially and ethnically diverse, lower income community members (Community Advisors on Research Design and Strategies: CARDS1) was trained to review study designs and procedures and provide recommendations to researchers for increasing participation and making research materials more understandable to members of underrepresented communities. In this mixed methods study, one participant group (n 1⁄4 55) was shown research materials (recruitment documents and a consent form) developed by a research team and approved by the local IRB. A second group (n 1⁄4 45) was shown the same materials after they had also been reviewed and revised by CARDS. Interviews, which included both fixed- response and open-ended questions, were used to assess reactions of partici- pants in both groups to the materials, including their hypothetical willingness to volunteer for the research described. Group differences were examined using the Chi-square distribution test. Proportional difference effect sizes were esti- mated using arcsine transformation. The qualitative data were subjected to con- ventional content analysis. Participants in the group shown the recruitment materials revised by CARDS were more likely to say they understood the docu- ments, more likely to ask for more information about the study, and more likely to say they would participate in the research. Results of content analysis suggested a four-phase sequential process for deciding whether to participate in the research. 

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  • Health care justice and its implications for current policy of a mandatory waiting period for elective tubal ligation

    Lillian Ringel – Alumni

    American Journal of Obstetrics and Gynecology – March 24, 2017

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  • Paternalism, Autonomy, and Food Regulation

    Maura Priest – Student

    Public Affairs Quarterly – March 24, 2017

    In 2012, former New York City mayor Michael Bloomberg proposed legislation that would ban the sale of sugary drinks in containers larger than 16 ounces. The growth of the obesity epidemic suggests that proposals for similar measures will increase in coming years. As public health officials' focus shifts, campaigns against smoking are being replaced with campaigns against sugar, fat, and carbs. Governments may be quick to propose regulations that incapacitate our ability to make bad health choices. Prima facie, it may seem that any inquiry into the justificatory grounding of Bloomberg's proposal or other "food bans" would be nothing more than re-engagement with familiar issues regarding paternalism, coercion, liberty, and respect for persons. Governments have a long history of approving legal mandates concerning smoking, narcotics, seat belts, vaccinations, and more. Philosophical discussions on the aforementioned have a prolific literature, and Bloomberg's ban might seem like just an addition to the list. If so, we should simply re-engage old arguments and apply them to the matter at hand. But this would be a mistake.

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  • An Interview with Tom Beauchamp, Early Bioethics Innovator

    Elizabeth Galt – Alumni

    Voices in Bioethics – March 24, 2017

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  • Criminalizing substance use in pregnancy: misplaced priorities

    Carl Erik Fisher, Katrina Hui, Cara Angelotta – Faculty

    Society for the Study of Addiction – February 28, 2017

    Chemical endangerment’ laws in the United States mark an increasingly growing trend to punish women with substance use disorder. These measures are counterproductive. They create barriers to substance use treatment and prenatal care, disproportionately affecting minority and low-income women. Contingency management programs and expansion of social services would be more effective in protecting children and women and improving the problem more generally.

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