'I'm Willing To Try Anything': Compassionate Use Access To Experimental Drugs And The Misguided Mission Of Right-To-Try LawsAmy Scharf and Elizabeth Dzeng – Alumni
Health Affairs – June 14, 2017View Full Article
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?
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, 2017View Full Article
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.
Health care justice and its implications for current policy of a mandatory waiting period for elective tubal ligationLillian Ringel – Alumni
American Journal of Obstetrics and Gynecology – March 24, 2017View Full Article
- Maura Priest – Student
Public Affairs Quarterly – March 24, 2017View Full Article
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.
- Elizabeth Galt – Alumni
Voices in Bioethics – March 24, 2017View Full Article
- Carl Erik Fisher, Katrina Hui, Cara Angelotta – Faculty
Society for the Study of Addiction – February 28, 2017View Full Article
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.
- Kira Peikoff – Alumni
Popular Mechanics – January 18, 2017View Full Article
- Adira Hulkower, Tia Powell – Student
Hastings Center Report – January 11, 2017View Full Article
A good death is hard to find. Family members tell us that loved ones die in the wrong place—the hospital—and do not receive high-quality care at the end of life. This issue of the Hastings Center Report offers two articles from authors who strive to provide good end-of-life care and to prevent needless suffering. We agree with their goals, but we have substantial reservations about the approaches they recommend. Respect for the decisions of patients and their surrogates is a relatively new and still vulnerable aspect of medical care. For thousands of years, patients and surrogates had no say in medical decision-making. Today, standards support shared decision-making, but these articles both carve out exceptions to those standards, limiting the rights of patients and families in decisions about specific end-of-life treatments. As bioethics consultants in an acute care setting, we frequently confront conflicts similar to those described by Jeffrey Berger and by Ellen Robinson and colleagues. In such cases, our service emphasizes redoubled efforts at communication and mediation. Focusing on goals and values, rather than interventions, produces the best possible collaboration in health care decision-making. Cases in which we would overturn a surrogate's recommendations regarding palliative sedation or do-not-resuscitate orders are rare and require careful processes and clear evidence that the surrogate's choice is contrary to patient values.
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