Today is both DNA Day and World Malaria Day. As I was pondering how to connect the topics, e-mail arrived from my “son,” a medical student in Liberia. He had malaria, again, and this time it had gone to his brain.

I “met” Emmanuel in 2007, when he e-mailed me after finding my contact info at the end of my human genetics textbook, which he was using in his senior year of high school. He is my personal link between DNA Day and World Malaria Day. But the dual commemoration also reminds me of the classic study that revealed, for the first time, how hidden genes can protect us – that carriers of sickle cell disease do not get severe malaria.

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.

Mary Shanley argues against anonymous gamete donation on the basis of what she describes as the right of children conceived using donated gametes to “learn the identity of one’s genetic forebear.” Shanley believes this right stems from “some people’s desire to connect themselves to human history concretely as embodied beings…” I challenge Shanley’s viewpoint as being “progeny-centric,” because while it acknowledges the potential desire of the children created from gametes to learn information about the gamete donor, it fails to consider the rights or interests of that donor, both at the time of the donation, and later, when a child exists.  While I agree with Shanley that some children of gamete donors may desire identifying information about the donor, I disagree that those children have a right to access information about the donor beyond that which the donor agreed to provide or which was required at the time of donation such as genetic and medical history.  Instead I would propose a system where anonymity is optional, akin to the policy of open and closed adoption.  This approach recognizes the interests of the donor, respecting their right to privacy and medical confidentiality, while leaving open the possibility for any future children to inquire about their genetic origins and donor information.  

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.

In the fall of 1970 Philip Tumulty, a Johns Hopkins’ internist, gave a lecture to the 3rd year medical school class at Johns Hopkins. His lecture was published in the same year in the New England Journal of Medicine under the title of “What is a clinician, and what does he do?” (Tumulty PA. What is a clinician and what does he do? N Engl J Med. 1970 Jul 2;283(1):20-4.) In this classic piece, this eminent physician of his era claimed that the primary role of the clinician is to “manage a sick person with the purpose of alleviating the total effect of his illness”. 

This paper, probably better than any other paper I have ever read gets to the essence of what a patient needs from an expert clinical caregiver; it lays out eloquently and robustly the characteristics of a good clinician and what is involved in excellent clinical care of patients. As Tumulty says, it is not a diseased body organ that shows up for physical diagnosis and treatment; rather, it is an anxious, fearful, wondering person concerned about her personal life, including her family, work, friends as well as her hopes and dreams. This means the clinician must be a thoughtful and systematic fact finder, a careful listener, a keen analyst of the facts and a prudent planner regarding which tests and treatment options make the most sense for this particular patient. Moreover, Tumulty rightly assumes that these skills should be embodied in the clinician as natural traits that the clinician genuinely enjoys performing. 

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.

The FDA has banned generic availability of the original formulation of OxyContin® (Purdue Pharma LP’s brand of oral controlled-release oxycodone). OxyContin® was approved by the FDA in 1995 and was first marketed in the US in 1996. Within a very short time, OxyContin® was the most frequently prescribed brand name analgesic with annual sales in the billions of dollars. By 2005 retail purchases were six times the 1997 volume; by 2008, sales totaled $2.5 billion.

Purdue was very effective in marketing OxyContin®. The manufacturer used several “sales strategies” that have since been roundly criticized by regulators and some physicians: aggressive off-label detailing; technically misbranding the product so as to mislead prescribers and patients regarding abuse potential; applying “significant political pressure” to gain state Medicaid formulary approvals; and engaging nationally recognized pain management thought leaders which “encouraged more liberal prescribing of opioids, based on debatable evidence.” With the increased prescribing, more of the drug was available for potential diversion to illegitimate channels. Not surprisingly, the number of accidental deaths from opioid drugs – licit and illicit – have grown in just a few years into a national crisis of epidemic proportions.

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.

During a week in which there were a series of tragic events I have selected to write about a scientific discovery that caught my interest.  This news story described the findings published in Science Magazine by a consortium of planetary scientists announcing the discovery of a planetary system of five planets orbiting the star designated Kepler-62. Kepler-62 is 1,200 light years away from Earth, a considerable distance. This discovery follows on the heels of a recent report in the Astrophysical Journal of a similar planetary system orbiting Kepler-69, an earth-sized star 2,700 light years from Earth. I find this to be really fascinating stuff. What makes this so fascinating is that these planetary systems include multiple planets in so-called “habitable zone”, a region appropriate in distance from the corresponding star which would permit water to exist in liquid form. 

You might ask why I would write about this in a bioethics blog. How is this possibly related to bioethics? The answer, to me, is that these planets may meet the criteria to support life. Indeed they may meet the conditions to support life as we know it. Thus I am suggesting that our conceptualization of the existence of life on these planets, the impact of such conceptualization upon us, and our ability to relate to the possibility of life in our universe beyond Earth puts this adequately within the realm of bioethics to fit in this blog. 

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.

When Beauchamp and Childress wrote their first edition of Principles of Biomedical Ethics, Immanuel Kant figured prominently in their discussion of the principle of autonomy.  Now he warrants barely a mention in the same, much revised chapter of the sixth edition.  Why the substantial de-emphasizing of Kant’s philosophy, when he wrote such important ethical treatises in which the human ability to make free and autonomous choice is so central?  Isn’t his philosophy the basis for our biomedical principle of autonomy?  The surprising answer is no, it cannot be. One reason is that Kant’s philosophical use of the principle of autonomy is actually quite different than the biomedical principle.  The other answer is that Kant’s principle does not provide a philosophical justification for the protection of patient’s rights.  I will explain both of these perhaps surprising claims.  But I do believe there is still a role for Kantian autonomy in the discipline of bioethics:  it remains a valid criterion (or yardstick) for when physicians should accede to patient requests for treatment.

Autonomous choice for Kant is ethical choice.  When we choose a course of action because it is consistent with the Categorical Imperative, we are choosing autonomously because we are freely choosing to obey an ethical law rather than being a slave to our passions and desires—we are not being pushed along by the world, we are initiating a new action for reasons that are somewhat “otherworldly” because they are neither empirical nor material, the ethical law is a priori and therefore “above the fray”.  But patients choose a course of action in healthcare for many reasons, and most of these reasons are amoral, and some may even violate Kant’s Categorical Imperative, such as refusing treatment for a non-terminal condition.  Kant saw any “suicide” as a violation of the second statement of the Categorical Imperative because human life must never be treated as a means to an end, and suicide abandons life for some reason (intractable pain, depression, despair), thereby treating it as a means, not an end in itself.  The point of this is that most decisions in a healthcare setting do not qualify as autonomous under Kant’s framework, because they are not ethical decisions in a strict sense.  They are done for personal reasons, which need not conform to moral law.

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.

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.

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.

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.

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.