Stories about: ethics

Expectation vs. reality: Rare disease parents’ mixed feelings about genetic research results

rare disease genetic resultsTypically, when you enroll in a study, it’s not with the expectation that you will receive results. In genomics studies, it’s becoming common to give families the option to get individual results — the newborn sequencing study, Baby Seq, is just one example — as an incentive to participate. Families of children with rare disease, especially undiagnosed illnesses, need no incentive: they’re desperate for answers.

But how do families actually feel once they get genetic results? We conducted interviews with nine rare disease parents (six mothers, three fathers) whose children were enrolled at the hospital’s Manton Center for Orphan Disease Research. What we found is more complexity than we expected.

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Responding to Ebola in West Africa: Farmer calls for staff, space, supplies, systems

Paul Farmer, president and co-founder of Partners in Health, has dedicated his life to the idea that the problems of the world’s poorest people are humanity’s problems writ large. Having recently returned from West Africa, Farmer spoke at Harvard Medical School and appeared on the Colbert Report last week, calling for a stronger response to the Ebola outbreak.

“We want to have a radical inclusiveness,” Farmer told the Harvard Medical School audience. “We readily acknowledge that we are overwhelmed by this.”

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Was it ethical to give two Americans an experimental Ebola therapy?

Ebola response ethics experimental treatment therapy ZMapp
Guinean Red Cross volunteers prepare to decontaminate a hospital in the capital, Conakry. (European Commission DG ECHO/Flickr)

The world paused for a moment when the news broke last week that two Ebola-infected American missionaries working in Liberia had received an experimental therapy called ZMapp. As I write this, both patients are back on U.S. soil, and seem to be responding well to the treatment.

But was it ethical?

That difficult question can be divided into two. First is the question of whether it was ethical to give the two patients a drug that, up to that point, had never been tested in people. The second—in some ways thornier—question is: Was it ethical to give the treatment to two Americans but not the nearly 1,850 West Africans infected in the outbreak (as of August 11)?

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Communication and the patient experience: On being present, not perfect

Clinical excellence is the foundation of patient care. But at a recent TEDx Longwood event, Elaine C. Meyer, PhD, RN, co-founder and director of the Institute for Professionalism and Ethical Practice at Boston Children’s Hospital and an Associate Professor of Psychology at Harvard Medical School, offered insight on the other half of the health care equation: the human connection and the power of conversation.

Meyer’s moving presentation makes clear how communication—listening and sharing words of comfort—profoundly impacts patient experiences, as does its absence. Through heartfelt stories, including her own experience as a patient, her talk empowers physicians, nurses, social workers, psychologists and other medical staff to “be present” and communicate with patients and families compassionately.

“Dig deep, find your inspiration to have conversations,” Meyer says, because patients remember the words spoken to them and how those words made them feel.

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DNR orders and end-of-life decisions for children: The elephant in the room

End of life decisions: The elephant in the roomAmy Sanderson, MD, is a critical care physician at Boston Children’s Hospital whose research interests include developing and studying interventions to improve the quality of communication among clinicians, parents and children with life-threatening illnesses.

Do-Not-Resuscitate (DNR) orders are supposed to tell clinicians what not to do should a patient stop breathing or his heart stop beating (cardiopulmonary arrest). But our research in children with life-threatening illness reveals that DNR orders often are used in variable, unintended ways that, while well-intentioned, are problematic.

We surveyed physicians and nurses practicing in oncology, the intensive care unit (ICU) and the cardiac ICU—settings where end-of–life decisions typically take place. Of our 266 respondents, 67 percent agreed that a DNR order should guide medical decisions only during a cardiopulmonary arrest. Yet, in reality, their responses indicate that DNR orders influence care much more broadly.

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Pediatric palliative care: What are the child’s best interests?

(Quinn Dombrowski/Flickr)
(Quinn Dombrowski/Flickr)

When someone is terminally ill, what is the right treatment course? Should treatment be stopped altogether? What is in the patient’s best interest? What role should medical professionals, including clinical ethicists, play in the decision-making process?

Such decisions can tear families apart, and the choices can confound politicians, policy makers and the public. In 2012, Massachusetts voters rejected a ballot question that would have allowed physician-assisted suicide for terminally ill patients. The initiative lost by 1 percent of the vote. Federal legislation would have provided Medicare reimbursement to physicians for counseling patients about living wills and end-of-life care, but the provision was dropped amid claims that it would create “death panels” that would judge whether a patient is “worthy” of care.

Publicly, most palliative care and end-of-life debates focus on the elderly, but the issues are especially complex and wrenching for children and teens facing severe, painful or life-threatening conditions. Children are at the beginning, not the end, of life, and the adults involved in medical decision-making may have conflicting interests and wishes.

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When to tell: The numbers problem with genomic studies and the “incidental finding”

Do the cells in this blood harbor a potentially harmful gene? If the answer is yes, but the person it belongs to donated it for unrelated research, it's not yet clear when - or how - to tell them. (JHeuser/Wikimedia Commons)

Snippets of tissue, vials of blood and tubes of DNA from hundreds of thousands of people sit in freezers and liquid nitrogen tanks right now in laboratories across the globe. They come from people like you and me, donated in the hope that our genes researchers will be able to glean insights for the next breakthroughs for diseases common and rare.

Whenever we sign a consent form and roll up our sleeve, we don’t just join the community of research. We also become part of a debate that has been raging among researchers, clinicians and ethicists for years: What if our DNA sequence turns up bad news unrelated to the research we signed up for?

“There is an emerging consensus among genomics researchers that we have an ethical responsibility to tell participants if we find, in the course of a research study, genetic variations that could impact their healthcare decisions,” says Kenneth Mandl, who directs the Intelligent Health Laboratory (IHL)  in the Children’s Hospital Informatics Program (CHIP).

This responsibility can quickly turn into a numbers problem – a massive administrative burden. Consider that there are more than 104,000 human genetic variations now cited in the medical literature with links to human disease.

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Holiday books 2: Evidence-based reading and ranting

As part two of our series of Friday holiday book posts, we’re featuring some reader suggestions. Among these are some of the most popular books now at Children’s Hospital Boston, as judged by their turnover. “We can’t keep them in the library,” says head librarian Alison Clapp.

The Fever: How Malaria Has Ruled Humankind for 500,000 Years, by Sonia Shah (Farrar, Straus and Giroux, 2010). Vampires may be all the rage in some circles, but they cannot compete against female mosquitoes risking a life-ending swat to acquire a drop of precious blood to nourish their eggs.

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