Savior Siblings in the United States

By Zachary Shapiro

With the emergence of new techniques in the field of reproductive technology, applications arise that seem more the realm of science fiction than reality. While many have considered stem cells to be the next frontier of modern medicine, reproductive technology may offer hope to many individuals suffering with rare and unique genetic diseases.

The term “savior siblings” refers to the use of pre-implantation genetic diagnosis (PGD) and other forms of in-vitro fertilization (IVF) in order to create a sibling for the purpose of providing biological material (bone marrow, blood, etc.) that can help treat or cure an existing terminally ill child. It is estimated that up to one percent of PGD in the United States is used to create children that are tissue matches for their siblings. See here.

There has been little meaningful discussion about savior siblings in bioethical or legal circles, and there is no formal regulation governing their use or creation in the United States. This stands in stark contrast to other countries, particularly England, France, and Australia, where a regulatory framework for the use of savior siblings has arisen along with debate over their acceptability. These countries are already discussing how to ethically deal with this extremely complicated issue.  Read More

Parental Consent for Youth Contact Sports Participation

As we enter into the fall sports season, it’s unlikely that a week will go by where we don’t hear the current buzzword in sports community: concussion. Whether in reference to an acute player injury, an untimely death, new or ongoing litigation, or rule changes in sport, the athletic community and the public are increasingly aware of the impacts of these brain injuries. Although much of the media attention is directed toward college and professional athletes, youth and high school athletes significantly outnumber their older counterparts and it is thought that they take longer to recover from these injuries.

A recent publication by Mannings and colleagues surveyed 369 parents of 5-15 year old full-contact football players in order to assess the parents’ understanding of concussion (1). Although the study does have limitations, its finding could have important implications. The parents surveyed were often missing critical information about concussions. For example, less than half of parents correctly identified that concussion is a mild traumatic brain injury. Additionally, none of the parents surveyed correctly identified all of the symptoms of concussion queried in the study. Although it is mandated by statute in the majority of states (2) that parents and/or athletes are provided with information about concussions prior to sports participation, the extent to which the information provided (normally in the form of an information sheet) is read, understood, or retained is not well understood.

Sports participation is associated with a myriad of positive physical, psychological, and social outcomes. However, it also comes with the risk of injury, including concussion. For youth and adolescents, parents play a critical role. Most often, children and adolescents rely on parental consent to participate in sports. Given parents’ role as decision-makers, and the finding of Mannings and colleagues, an important ethical issue that needs to be addressed is what level of knowledge should be required for parents to provide informed consent for their child to participate in inherently risky activities such as contact sports?

[This post reflects my own views only.  It does not necessarily represent the views of the Petrie-Flom Center or the Football Players Health Study at Harvard University.]

Immediate Job Opening: Clinical Ethicist at Boston Children’s Hospital

Clinical Ethicist
Boston Children’s Hospital
Boston, MA

The Office of Ethics at Boston Children’s Hospital has an immediate opening for a clinical ethicist. Applications are being accepted online, at www.childrenshospital.jobs.   To locate the position on the website, enter “32902BR” in the box labeled “AutoReqID.”

Boston Children’s Hospital is a 395-licensed-bed children’s hospital in the Longwood Medical and Academic Area of Boston, Massachusetts. At 300 Longwood Avenue, Children’s is adjacent to its teaching affiliate, Harvard Medical School.

Job description: Clinical Ethicist 32902BR

The Clinical Ethicist provides formal and informal ethics consultations.  Organizes and participates in clinical ethics rounds, and collaborates with clinical teams, patients and families, to address ethical issues in pediatric health care and research. Develops ethics resources and education and serves as a facilitator for change directed toward strengthening the Hospital staff’s sense of moral responsibility and moral community.

Read More

Art Caplan: “Was Sarah Murnaghan Treated Justly?”

Art Caplan has coauthored a new opinion piece in the journal Pediatrics on the controversy over the case of Sarah Murnaghan, in which a federal judge ordered the Secretary of Health to place a pediatric patient on the adult transplant list to increase her chances of receiving a donor organ. From the piece:

Lung transplantation is a potentially life-saving procedure for patients with irreversible lung failure. Five-year survival rates after lung transplantation are >50% for children and young adults. But there are not enough lungs to save everyone who could benefit. In 2005, the United Network for Organ Sharing developed a scoring system to prioritize patients for transplantation. That system considered transplant urgency as well as time on the waiting list and the likelihood that the patient would benefit from the transplant. At the time, there were so few pediatric lung transplants that the data that were used to develop the Lung Allocation Score were inadequate to analyze and prioritize children, so they were left out of the Lung Allocation Score system. In 2013, the family of a 10-year-old challenged this system, claiming that it was unjust to children. In the article, we asked experts in health policy, bioethics, and transplantation to discuss the issues in the Murnaghan case.

Read the full article.

Art Caplan on “Pediatric Euthanasia in Belgium: Disturbing Developments”

Art Caplan has coauthored a new piece in JAMA on problems with Belgium’s new law allowing terminally-ill children and their families to choose euthanasia. From the article:

The Belgian pediatric euthanasia law seeks to respect the moral status of children as agents who possess the nascent capacity for self-determination. Specifically, the law requires the medical team to demonstrate a patient has the “capacity for discernment,” indicating that he or she understands the consequences of a choice for euthanasia.

What the law does not consider, however, is that adults choose euthanasia for reasons that go beyond pain. For adults, the decision to end their life can be based upon the fear of a loss of control, not wanting to burden others, or the desire not to spend their final days of life fully sedated. These desires might be supported by the experience they have had witnessing a loved one express a loss of dignity or because they understand what terminal sedation is and wish to refuse it. Children, however, lack the intellectual capacity to develop a sophisticated preference against palliative interventions of last resort. Instead, in the case of the new Belgian law, children seem to be asked to choose between unbearable suffering on the one hand and death on the other.

This possibility causes the Belgian euthanasia law to fall short of the standard required for valid assent. The criterion related to the “capacity for discernment” runs the risk of ignoring the fact that children and adolescents lack the experiential knowledge and sense of self that adults often invoke—rightly or wrongly—at the end of their lives.

Read the full article.

Lax Enforcement of Vaccine Laws Put Young Adults at Risk

The news about the return of dangerous “childhood” illnesses gets worse and worse. Columbus, Ohio reports an outbreak of 225 cases—with over 50% students at Ohio State University.   It is probably no coincidence that Ohio State recommends but does not require students (outside of those in healthcare settings) be vaccinated in order to attend class.   It’s not just Mumps.  We are seeing cases of preventable diseases like measles and mumps and whooping cough because of parental decisions not to immunize their children but there is increasing evidence that the immunizations most adults received as infants or young children wear off—leaving the population at large vulnerable to infection once an outbreak occurs. Science Daily just reported a confirmed case of a fully vaccinated young woman contracting measles.  The CDC has not yet recommended that adults get booster shots for Mumps and Measles—although they have in some circumstances for Whooping Cough and Polio.  But the more likely it is for a person to be exposed to these diseases, the more important it is to be fully vaccinated.

So why is the law to blame here?  Read More

TOMORROW: Hot Topics at Presidential Commission on Bioethics

Hot Topics at the Presidential Commission for the Study of Bioethical Issues: Plus Q&A on Careers in Law and Bioethics!

Friday, April 11, 2014, 12:00pm

Pound Hall 100, Harvard Law School, 1563 Massachusetts Ave.

Please join us for an update from the Presidential Commission for the Study of Bioethical Issues, delivered by Michelle Groman (HLS ’05), Associate Director at the Bioethics Commission.  Since its inception in 2009, President Obama’s Commission has issued reports on synthetic biology, human subjects research, whole genome sequencing, pediatric medical countermeasure research, and incidental findings. Currently, the Commission is examining the ethical implications of neuroscience research and the application of neuroscience research findings as part of the federal government’s BRAIN Initiative.  The Commission also has developed educational materials to support teaching of bioethics ideas, principles, and theories in traditional and non-traditional settings.

This final half-hour of this event will feature a discussion of career opportunities in law and bioethics, led by Ms. Groman and Holly Fernandez Lynch, Petrie-Flom Center Executive Director.  Bring your questions!

This event is free and open to the public. Lunch will be served.

For questions, contact petrie-flom@law.harvard.edu, or 617-496-4662.

Cosponsored by the Office of Career Services at Harvard Law School. This event is supported by the Oswald DeN. Cammann Fund.

4/10 Book Launch: The Witch-Hunt Narrative: Politics, Psychology, and the Sexual Abuse of Children

Thursday, April 10, 2014, 12:00pm

Wasserstein Hall 2019A, Harvard Law School, 1585 Massachusetts Ave.

Please join us for the launch of Professor Ross E. Cheit‘s new book The Witch-Hunt Narrative: Politics, Psychology, and the Sexual Abuse of Children (Oxford University Press, April 2014). It has become widely accepted that a series of high-profile child sexual abuse cases from the 1980s and early 1990s were “witch hunts.” That view first took hold in the media, then spread to the courts and academia. But purveyors of the witch-hunt narrative never did the hard work of examining court records in the many cases that reached the courts throughout the nation. Drawing on fifteen years of original trial research into these child sex abuse cases, Cheit challenges the accuracy of the narrative. The launch event will feature panel discussion including:

  • Ross E. Cheit, Professor of Political Science and Public Policy, Brown University
  • Jeannie Suk, Professor of Law, Harvard Law School
  • Alan A. Stone, MD, Touroff-Glueck Professor of Law and Psychiatry, Harvard Law School

This event is free and open to the public.

For questions, contact petrie-flom@law.harvard.edu or 617-496-4662.

Is Finding Malaysia Airlines Flight MH370 Worth 52,192 years of children’s lives?

[Note: This post is meant to be provocative and press a public policy question in the most thought-provoking way possible. Losing a loved one is among the most heart-wrenching experiences in a life time and my heart goes out to all those with loved ones on the flight waiting for answers. But one of the major points of this post is to highlight our tendency to spend more on identified lives not statistical ones for just these kinds of reasons and ask if it is justified.]

The search for Malaysia Airlines Flight MH370 is likely run to “Hundreds of Millions of Dollars” according to the most recent estimate from ABC News. This is based on extrapolation of the difficulties involved and the experience of searching for Air France 447 which cost 50 million USD. Let’s take a conservative estimate of 100 million USD to find the plane, probably on the low end. Let us put aside the possibility that even with that expenditure the plane will never be found, again an assumption that counts against the argument I will be making. This is 100 million dollars spent, roughly speaking, on “helping.” It is very unlikely that there are any survivors, so I don’t think this can reasonably be thought of as “life-saving” (I will assume it is not, but if it were  that wouldn’t make that much of a difference in the argument I will offer though it will require confronting the question of Should the Numbers Count for life saving?).

Instead the money is being spent (1) to satisfy the somewhat diffuse curiosity/grief of those who have watched this in the media, (2) to give answers to the very deep need for closure of the loved ones of those flying on these planes, and (3) to learn about what went wrong and potentially determine whether there is a systemic problem with these planes that might affect other planes.

All of those are worthy goals. But are they worth 100 million USD? In the category of “helping” or “life-saving” what else could we do with the money? Let me draw on one estimate mentioned by Ezra Klein in the WaPo and Don Taylor at the Incidental Economist from a paper by Tammy Tengs “Five Hundred Life Saving Interventions and Their Cost Effectiveness

I chose the cheapest intervention, influenza vaccines for children age 5+ which is estimated to cost $1,300/life year saved in 1993 dollars. I then updated that to 2013 dollars with a conversion calculator to generate a cost of 1915.89 USD per life year saved (it may also be that this intervention is now cheaper than it was at the time of Teng’s paper). I then divided 100 million dollars by that number to get my 52,192 life years saved for children estimate. That is fairly back of the envelope and there are lots of tweaks you would do to get a more exact figure, but it is close enough to make the point: Why are we spending so much on Malaysia Airlines search when we could be saving so many lives?

Read More

RESCHEDULED: 4/11, Hot Topics at Presidential Commission on Bioethics

Hot Topics at the Presidential Commission for the Study of Bioethical Issues: Plus Q&A on Careers in Law and Bioethics!

Friday, April 11, 2014, 12:00pm

Pound Hall 100, Harvard Law School, 1563 Massachusetts Ave.

Please join us for an update from the Presidential Commission for the Study of Bioethical Issues, delivered by Michelle Groman (HLS ’05), Associate Director at the Bioethics Commission.  Since its inception in 2009, President Obama’s Commission has issued reports on synthetic biology, human subjects research, whole genome sequencing, pediatric medical countermeasure research, and incidental findings. Currently, the Commission is examining the ethical implications of neuroscience research and the application of neuroscience research findings as part of the federal government’s BRAIN Initiative.  The Commission also has developed educational materials to support teaching of bioethics ideas, principles, and theories in traditional and non-traditional settings.

This final half-hour of this event will feature a discussion of career opportunities in law and bioethics, led by Ms. Groman and Holly Fernandez Lynch, Petrie-Flom Center Executive Director.  Bring your questions!

This event is free and open to the public. Lunch will be served.

For questions, contact petrie-flom@law.harvard.edu, or 617-496-4662.

Cosponsored by the Office of Career Services at Harvard Law School. This event is supported by the Oswald DeN. Cammann Fund.