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Viewing by month: April 2013
April 25, 2013 | Posted By Zubin Master, PhD

Several scholars claim that hyping different biotechnologies will lead to a loss of public trust which in turn will result in a loss of support for science. This has been discussed in the context of genomics research, gene therapy, stem cell research, biobanking, neuroimaging research, and nanotechnology. The problem most articulate is that hype in terms of promising medical benefits to the public will generate an expectation by the public and when such expectations are unmet, the public’s support for science will wane. Certainly there is social science evidence to support that (a) hype over many biotechnologies is present in the popular media and (b) several actors are involved in hyping science including scientists, media, politicians, and others. And while the idea that hype and unmet expectations could result in a loss of public trust and support for science seems logical and to some degree intuitive, I think the reality is that the relationship between hype, public trust, and the loss of support for science is quite complex. It is also complicated to measure empirically and to date, there is no study I have come across that demonstrates this relationship. In fact, the one study evaluating the public and donor’s perceptions on hype and stem cell research actually shows that people “aren’t taken in by media hype.”

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

April 23, 2013 | Posted By Marleen Eijkholt, PhD

Medical situations can instantly change. This can be for the better or for the worse:  A patient who consistently refused to eat, now suddenly decides to eat. A patient who is delirious or manic threatens a staff member at 11:50, but subsequently seems rational and reasonable when we arrive in his room 15 minutes later. A stroke patient who does not communicate or respond, and who is likely to develop into a permanent vegetative state (PVS), perks up, talks and leaves. A patient, who is on the mend, develops a fever, requires a rapid response and dies. 

The ethical issues, similarly, change instantly in these situations. It requires me, as a new clinical ethics, to constantly redefine my perspectives. Where we plan to discuss placement of a feeding tube, the patient’s mood alteration resolves issues around placement and resolves the ethical questions. Where we address concerns around a safe discharge, we find out that the patient’s mood changes at 12 o' clock, and awareness of this time frame allows for a safe discharge. Where have family meetings to discuss quality of life in a PVS, this discussion is no longer necessary as the patient can be discharged.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

April 18, 2013 | Posted By Ricki Lewis, PhD

You have your genome or exome (the protein-encoding part) sequenced to help diagnose a puzzling set of symptoms, and something totally unrelated, and unexpected, turns up – a so-called “incidental finding.”

Surprises, of course, aren’t new in medicine. The term “incidental finding” comes from “incidentaloma,” coined in 1995 to describe an adrenal tumor found on a scan looking for something else. I had one — a CT scan of my appendix revealed a polycystic liver. A friend had it much worse. She volunteered to be a control in an Alzheimer’s imaging trial, and her scan revealed two brain aneurysms!

Geneticists have long expected an avalanche of incidental findings from clinical (exome or genome) sequencing. Researchers from Baylor College of Medicine and NHGRI and elsewhere described several cases at the American Society of Human Genetics annual meeting last fall. My favorites:

- A boy had his genome sequenced as part of a project to better diagnose syndromes of developmental delay, intellectual disability, and seizures. Researchers found the aorta weakening of Marfan syndrome, gave the boy a repurposed drug in clinical trials, and he’s ok.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

April 16, 2013 | Posted By Lisa Campo-Engelstein, PhD

We often hear stories in the media about women (and it is usually women, not men) who are irresponsibly reproducing (e.g. teenage girls, older women, single women, women on welfare, women with addictions, etc.). While determining what counts as responsible reproduction is not always an easy task, one way to do so is by drawing on the principle of nonmaleficence (aka “do no harm”). John Arras and Jeffrey Blustein present this line of thinking in their discussion of what it means to responsibly reproduce: “If one can reasonably be expected to predict that, should a person decide to reproduce, the resulting child’s existence would fall below a certain threshold of acceptable well-being, the person can be blamed for reproducing irresponsibly.” Arras and Blustein enumerate a range of ideas of what counts as being below this threshold from least controversial to most controversial: child abuse and neglect, children born with severe medical conditions, “anything that parents do to lower a child’s potential” (e.g. drinking alcohol during pregnancy), and “parents who do not optimize their child’s potential for a good life” (e.g. genetic enhancement). Regardless of how this threshold is defined, the main idea here is that people should not reproduce if their potential children would be harmed. 

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

April 11, 2013 | Posted By Wayne Shelton, PhD

Much of the history of philosophy, including the history of philosophical ethics, can be summarized as the quest for a basis in an objective, rational truth. My sense is that many ethicists, both philosophers and non-philosophers, today have not let go of this quest entirely. The purpose of this short blog to is sketch briefly the philosophical landscape of our tradition and what I think is the proper response to it in terms of how we should view ethics.

Early Greek philosophers, such as Thales, Democritus, Parmenides and Heraclitus were seeking an understanding of the natural phenomena independent from traditional mythology. Their goal was to find an explanation that accounted for both diversity and change in nature, but also the unity and continuity. A basic question became, what is the ultimate source or the most basic element of the universe that helps us understand the universe, as well as what we know and how we should live? Plato, through his dialogues using Socrates as his mouthpiece, postulated that ultimate Truth or Good is to be found in the Forms, which were in a separate, higher realm from everyday human experience. For Plato, what we come to know in the realm of earthly experience is always an approximation of their ultimate counterparts in the Forms. Of course a special realm of truth requires a special understanding, which not surprisingly he believed was accessible only to the Philosopher King, whose understanding was oriented to such a level.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

April 8, 2013 | Posted By Jane Jankowski, LMSW, MS

Gamete retrieval after death or irreversible coma ought not to be counted among the many acceptable practices of assisted reproductive technology (ART) because the donor patient’s consent cannot be reasonably verified and there is no possibility to participate in childrearing activities. Although it is possible a case could arise where the patient leaves clear and convincing evidence of the wish to have gametes harvested following a devastating loss of brain function, I will argue that advance directives are still inadequate and decisions will necessarily default to family members who may have complicated feelings and agendas. In terms of intent, the absence of any ability to participate in childrearing should be taken into consideration when evaluating decisions about harvesting gametes from comatose or deceased patients, again placing the decision with the family members who must accept and accommodate these preferences.  Allowing such a practice affirms the irrelevance of participating in rearing one’s offspring, and this may be lead to a slippery slope of diminishing the importance of responsibility in childrearing activities. 

Advance directives provide some insight into what a patient may have wanted in terms of life sustaining treatment and perhaps allocation of organs and/or gametes. To harvest gametes from an individual who will not be able to affirm their intent to serve as donors for a partner may be morally uncomfortable for physicians. Performing a procedure to extend the reproductive liberty of a patient who will never have a role in any resulting child’s life may understandably challenge a provider’s beliefs about how far medicine ought to go in honoring patient or family requests. The role of surrogate decision makers for a patient who lacks capacity is to honor the spirit of advance directives, if not the exact specifications.  Honoring the autonomy of a patient, however; need not extend to the realm of unfulfilled life goals. A patient who stated they wished to donate organs would still have such a request reviewed and consent is sought from the family members in nearly all cases.  Beyond the consideration due the patient, we may also have an obligation to If  we trust the patient’s intent and permission to retrieve gametes after loss of consciousness, can we fully trust the recipients motives are not influenced by grief or secondary gain, such as disability benefit or estate distribution?

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

April 4, 2013 | Posted By John Kaplan, PhD

It is now just about a year since the American Association of Medical Colleges (AAMC) announced major changes to the Medical College Admission Test (MCAT). These changes will go into effect in about two years from now. This is a very big deal. These are the first changes since 1991. During 2011 86,181 people took the MCAT. This event was extremely important to all of these people. These are the people who wish to go to medical school. The results of the MCAT will be an extremely important determinant of who is admitted to medical school. The number of people who took the exam is approximately five times the number of people who will actually be admitted to and enter an American allopathic medical school for studies leading to the coveted Doctor of Medicine (M.D.). Those on this path have been planning and preparing for the MCAT for years. A change in the test will lead to corresponding changes in the path.

According to AAMC President and CEO Darrell G. Kirch, M.D. “We all know America is becoming much more diverse, and we have an aging population unlike anything we’ve seen in this country. These changes to the exam have been done with a very clear eye toward the changes that are occurring in health care and the kinds of physicians we will need.”

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

April 2, 2013 | Posted By Bruce White, DO, JD

Last week, with the publication on March 19, 2013, of the Presidential Commission’s report titled Safeguarding Children: Pediatric Medical Countermeasure Research, the Commission demonstrated its unique value to the American people. The report came as an answer to a request from the Kathleen Sebelius, Secretary of the Department of Health and Human Services. Following are the first two paragraphs from the January 6, 2012, letter sent by Secretary Sebelius to Dr. Amy Gutmann, chair of the Presidential Commission for the Study of Bioethical Issues:

The U.S. Department of Health and Human Services is responsible for developing and stockpiling safe and effective medical countermeasures to protect the nation from bioterror attacks. While it has made significant progress toward this goal for adults, the development of appropriate medical countermeasures for children lags, in part due to challenges in collecting basic dose and immunogenicity studies in pediatric populations.

On October 28, 2011, the HHS’s National Biodefense Science Board (NBSB) released its report and recommendation on the “Challenges in the Use of Anthrax Vaccine Adsorbed (AVA) in the Pediatric Population as a Component of Post-Exposure Prophylaxis (PEP).” The NBSB debated how best to obtain scientifically valid safety and immunogenicity data about AVA PEP for children, a complex issue with ethical, scientific, medical, legal, regulatory, and administrative challenges. In its recommendation, the NBSB concludes that it would be in the best interests of children to gather safety and immunogenicity data about AVA PEP in children prior to an anthrax event, rather than during a future crisis when the vaccine may be needed. The NBSB also recommends that such data be obtained only after the ethical considerations are adequately addressed and reviewed by an appropriate body.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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