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Ethics, Medicine and Society, Technology

Should physicians keep their professional and personal online identities separate?

Should physicians keep their professional and personal online identities separate?

smartphone_SoMA position paper published earlier this year by the American College of Physicians and the Federation of State Medical Board offered advice to physicians on how to engage in social media with patients, including a recommendation that doctors keep their professional and personal personas separate.

But a commentary published today in the Journal of the American Medical Association calls into question this guideline stating that it is “operationally impossible, lacking in agreement among active physician social media users, inconsistent with the concept of professional identity, and potentially harmful to physicians and patients.”

In their conclusion, the authors explain why a policy directing physicians to, above all, determine if content is appropriate for a public space is a better approach than suggesting they maintain different professional and personal online identities:

Resolving the online identity crisis requires recognizing that social media exist in primarily public or potentially public spaces, not exclusively professional or exclusively personal ones. Boundaries exist; they simply are not drawn around professional and personal identities, nor can they be. When a physician asks, “Should I post this on social media?” the answer does not depend on whether the content is professional or personal but instead depends on whether it is appropriate for a physician in a public space.

This approach has several advantages. First, it does not ask physicians to do the impossible, nor does it rely on an incorrect concept of professional identity. Second, it is likely to be more accepted by active physician social media users, in part by building on the vast experience physicians already have in navigating public spaces, rather than asking them to do something new or unfamiliar.

Third, this approach fits well within existing general professionalism curricula at medical schools, which encourage students to be mindful of professional identity in public and private spaces, not to fully separate their identities.

The full commentary is worth a read for medical professionals that are currently, or considering, using social media tools.

Previously: How a “culture of permission” prevents doctors from being active in social media, A reminder to young physicians that when it comes to social media, “it’s no longer about you”, Advice for physicians when interacting with patients online and How, exactly, can Twitter benefit physicians?
Photo by EdTech Stanford University School of Medicine

Ethics, Medicine and Society

A call to end the force-feeding of Guantánamo prisoners

Over the weekend, the Daily Beast published a piece from Stanford medical student Nuriel Moghavem and Marty Makary, MD, MPH, a Johns Hopkins University surgeon, on the practice of military physicians force-feeding Guantánamo Bay prisoners. Many Americans know little (or have thought little) about the practice, but it is something that, the authors write, raises serious issues for the medical community:

By using medical interventions to gag patients against their will, military doctors have strayed from their admirable role, historically marked with a red cross on their helmet, a sign even an enemy respected in the battlefield. Worse, this current precedent by military doctors is a terrible example to our nation’s 80,000 medical students. Violations of basic medical ethics tarnish a trust in physicians that could have future implications in U.S. medicine and international relations.

Earlier today I asked Moghavem, who is also a fellow with the Stanford Center for Ethics in Society, how he came to write about what’s happening at Guantánamo. He told me it ties into his long-standing interest in medical ethics and international affairs. “This is, to me, an important issue that requires a great deal of public outrage to create real change in American policy,” he said. “That outrage will come naturally when people know the facts, and I felt it was important to share those facts with the public.”

Ethics, In the News, Science, Stem Cells

Stem cell scientists must “remain engaged” in discussions of human cloning, say field leaders

Stem cell scientists must "remain engaged" in discussions of human cloning, say field leaders

Alan Trounson, PhD, president of the California Institute for Regenerative Medicine, co-authored a comment piece published yesterday in Nature discussing the issues surrounding therapeutic human cloning. The comments were sparked by last month’s announcement by researchers at Oregon Health and Science University of the successful derivation of embryonic stem cells from cloned human embryos. Although problems with the original research article have since surfaced, the crux of the finding remains unchanged. The article explains:

This formidable technical feat is potentially a key step towards developing replacement tissues to treat disease. Media coverage of the paper has also rekindled long-standing controversies about human cloning, the use of human eggs and the destruction of human embryos. The achievement is a timely reminder that scientists must remain actively engaged in discussions about the ethics of using human embryos for research in cell biology and regenerative medicine.

The researchers used a technique called somatic cell nuclear transfer, or SCNT, to create the embryonic stem cells. In SCNT, the nucleus of a mature, donated human egg is replaced with the nucleus from a cell from another individual. The egg is then stimulated to divide and become an embryo carrying the genetic information from the donor nucleus. The process would conceivably allow researchers or clinicians to create unique embryonic stem cell lines to match individual patients and would avoid issues of immune rejection that could arise with non-genetically matched ES cells. But it’s also the first step in potentially cloning a human for reproductive purposes.

In the article, Trounson and his co-author, Martin Pera, PhD, from the University of Melbourne, urge caution and proactive consensus building to address the many complex ethical and biological issues surrounding this type of work. It’s a very interesting read. They conclude:

The potential benefits of stem-cell research are immense. Prospects for transformative treatments for conditions such as macular degeneration, type 1 diabetes or Parkinson’s disease are now on the horizon. But without first convincing governments, the public, and funding and regulatory bodies that all the possibilities have been thought through and evaluated, headline-catching results could create a backlash that unnecessarily delays the tremendous potential benefits of cell therapies.

Previously: Stem cell guidelines under fire and New York Stem Cell Foundation researchers create human stem cell lines from SCNT

Ethics, Genetics, In the News

Is more always better? Stanford’s Greely and Ormond talk genetic disclosure on Science Friday

I’m kicking myself for not listening to it live, but today’s Science Friday on National Public Radio tackled, with the help of a couple of Stanford experts and their colleagues, a tough issue in genetic disclosure that I’ve written about here before. According to the description on the show’s website:

When doctors run out of clues on how to treat a cancer patient, they sometimes order a scan of all the patient’s genes. But such a test can turn up unexpected results, such as greater risk of another disease. When are doctors obligated to tell the patient what they know? And do patients have the right not to know?

Stanford bioethicist and law professor Hank Greely, JD, and genetic councilor Kelly Ormond joined two colleagues and host Ira Flatow in a half-hour discussion about just how much might be too much information for patients and doctors. And, although I haven’t listened yet (the audio of the discussion has just been posted), I can guess the punchline: There’s no black-and-white answer. Patients, researchers and clinicians alike (and, yes, even science writers!) are all stumbling into a brave new world in genetics and genomics that right now has more questions than answers. That’s why I’m excited to hear what Greely and his colleagues have to say.

An aside: I didn’t learn of the show ahead of time, but got wind of it via Twitter. As my colleague pointed out here earlier today, more and more scientists and science writers are using Twitter to stay connected and keep informed about events like conferences and media coverage in (nearly) real time. I certainly consider it one of my more valuable resources. If you’re interested in trying it out yourself, experiment with following organizations as well as people (the Science Friday radio show tweets its content each week as @SciFri, for example). But Greely, who tweets as @HankGreelyLSJU, has also been disclosing interesting tidbits about today’s show.

Previously: New recommendations for genetic disclosure released, When it comes to your genetic data, 23andMe’s Anne Wojciciki says: Just own it and Stanford neurologist discusses role of amyloid proteins in the nervous system on Science Friday

 

Ethics, NIH, Patient Care, Pediatrics, Research, Science Policy

Bioethicists say criticisms of preemie oxygen study could have “chilling effect” on clinical research

Bioethicists say criticisms of preemie oxygen study could have “chilling effect” on clinical research

Thanks to a public outcry that included objections from bioethics experts from across the country, the federal Office for Human Research Protections (OHRP) has decided to suspend sanctions it imposed earlier this year on a study of blood oxygen levels used to treat premature infants. The OHRP’s sanctions, issued in March, sharply criticized the study’s leaders for not providing the infants’ parents with adequate information about the risks of the trial. But many bioethics experts disagreed with the OHRP’s assessment of the situation.

Last week, a group of more than 40 of the country’s top bioethicists, including two at Stanford, sent a letter to OHRP stating that the sanctions could have a chilling effect on much-needed clinical research. In a highly unusual action, Francis Collins, MD, PhD, the director of the National Institutes of Health, worked with two colleagues to write a similarly critical letter that said, in part:

This controversy has alarmed some of the parents of infants who were in the study, confused the biomedical research community, and befuddled IRBs. Several other studies seeking new insights to improve care for these vulnerable infants have been put on hold as the field tries to understand the OHRP findings.

The two letters appear online today in the New England Journal of Medicine (NEJM), and constitute a remarkably intense criticism of the OHRP, the agency within the U.S. Department of Health and Human Services responsible for overseeing the safety and well-being of human research subjects.

I’ve been following the developing story with the help of Stanford bioethicist David Magnus, PhD, who was one of the writers of the bioethicists’ letter. Last week, before the agency revised its stance, Magnus summarized what the bioethics community found objectionable about the OHRP’s sanctions: “They believe in an absolute interpretation of risk,” he said. The agency’s risk assessment was based “not [on] what kids who are actually sick would be exposed to, but what a healthy child would be exposed to.” Healthy babies born at term face much lower risks of severe eye disease, neurological damage and death than the babies in the study – but the tiny preemies in the study weren’t healthy term infants, and were not placed at additional risk, the bioethicists assert, because of their participation in the study.

The tussle has a complex back story that involves 1,300 fragile premature infants, their parents, 23 academic medical centers and an important piece of paperwork.

Continue Reading »

Ethics, Genetics, Global Health, Research, Stanford News

International alliance launches effort to enable secure sharing of genomic and clinical data

The cost of genome sequencing has fallen dramatically in the last decade, ushering in a new era of personalized medicine and promising to yield more effective treatments for cancers and other serious diseases. As a result, an increasing number of people are opting to make their genetic data available for research, clinical and personal use. But as biological databases continue to grow with the influx of patients’ personal health information, meeting the challenge of interpreting this data in a way that’s useful in a clinical setting while protecting individuals’ privacy becomes imperative.

To confront this challenge, nearly 70 leading health-care, research and disease-advocacy organizations, including Stanford, have joined forces and created an international alliance dedicated to enabling secure sharing of genomic and clinical data. Members of the global non-profit announced this morning that they have each signed a letter of intent and committed to creating “an organization with responsible and transparent governance that will develop both technical and ethical standards for data sharing,” according to a release.

Stanford geneticist Carlos Bustamante, PhD, who is involved with the initiative, commented on the importance of the global alliance in accelerating biomedical research, saying:

A major goal of genomic medicine is understanding how common and rare genetic changes may contribute to health and disease. In order to assess the impact of a given change, we often need to aggregate data across many tens of thousands of genomes. A major goal of this initiative is building the data standards for securely sharing these genetic data in a way that enables patient-powered medicine while protecting privacy. Today, much of the data is in silos, be they individual universities, hospitals or research centers. We want to work together to aggregate these data in a way that enables new and powerful analyses while preserving privacy of research participants.

A strong advocate for increased representation of underserved populations in genetics studies, Bustamante added that he is “particularly keen to work on ways that engage minority communities and international partners.”

Formation of the alliance originated in January, when group of 50 colleagues from eight countries met to assess the current challenges and opportunities in genomic research and medicine and how to work together to foster medical progress. A white paper was circulated in June prompting organizations from Africa, Asia, Australia, Europe and North and South America to join the effort. Michael Stratton, director of the Britain-based Wellcome Trust Sanger Institute, explained in the release:

In recent years, many groups around the world have recognized the need for improved approaches to bring together genomic and clinical data, and some have made progress addressing this. But in coming together, and studying the challenges, we recognized that something was missing: an international body that spanned diseases and institutions, committed to furthering progress in an innovative and responsible fashion.

Looking toward the future, the alliance is now inviting others, including for-profit organizations, to join its ranks and develop a “common framework, enabling learning from data while protecting participant autonomy and privacy.”

Stanford bioethicist and law professor Hank Greely, JD, who participated in the January meeting, noted that although the initiative is just launching, it offers the best approach for sharing genomic and clinical data, while protecting privacy of participants. He said:

The global alliance holds the promise of an effective way to share genomic and clinical data that is critically important for medicine, while respecting the interests of the men and women that data describes. Both with respect to data sharing and to participant interests, the global alliance is a huge advance over our current “system,” which is, at best, a bedraggled patchwork of often inconsistent pieces. The global alliance is still being born; it will, no doubt, be a work in progress for a long time. But at least it offers the hope of real progress, in genomic medicine and in research participants’ rights.

Previously: Stanford researchers use data mining to show safety of peripheral artery disease treatment, Atul Butte discusses why big data is a big deal in biomedicine, Transforming personalized medicine into the new standard of care, Stanford geneticist talks tracking biological data points and personalized medicine and Scientists announce the completion of the ENCODE project, a massive genome encyclopedia

Applied Biotechnology, Ethics, Genetics, In the News, Medicine and Society, Stanford News

Whole-genome fetal sequencing recognized as one of the year’s “10 Breakthrough Technologies”

Whole-genome fetal sequencing recognized as one of the year's "10 Breakthrough Technologies"

A million years ago (all the way back in 2006!) I wrote an article for Stanford Medicine magazine about genetic technologies and the eugenics movement in this country during the first part of the 1900s. I still remember it as one of the most fascinating of my articles to research, demanding as it did that I speak with a variety of geneticists and ethicists about the increasing control that humans have over their genetic destiny.

When, last year, I had the privilege of writing about Stanford biophysicist Stephen Quake, PhD, and his work on whole-genome sequencing of fetuses before birth, I couldn’t help but remember that article of yore. What are we getting ourselves into?

Now MIT Technology Review has recognized whole-genome fetal sequencing as one of its “10 Breakthrough Technologies 2013.” Accompanying the designation is an in-depth review of the technology and its implications – which are far more complex than I could have imagined six years ago. The article contains comments from several experts, including Stanford law professor and bioethicist Hank Greely, JD, and Quake:

Quake says proving that a full genome readout is possible was the “logical extension” of the underlying technology. Yet what’s much less clear to Quake and others is whether a universal DNA test will ever become important or routine in medicine, as the more targeted test for Down syndrome has become. “We did it as an academic exercise, just for the hell of it,” he says. “But if you ask me, ‘Are we going to know the genomes of children at birth?’ I’d ask you, ‘Why?’ I get stuck on the why.” Quake says he’s now refining the technology so that it could be used to inexpensively pull out information on just the most medically important genes.

In my opinion, experts are right to consider the impact of this type of technology before it becomes commonplace. The ethical implications of parents learning their child’s genome sequence within a few weeks of conception – and of possibly using that information to make decisions about the pregnancy’s outcome – are substantial. Thankfully, some really smart people have been asking these questions in one form or another for years, even though the answers seem to end up more grey than black and white. From that ancient article I wrote six years ago:

For example, even though sex selection of embryos fertilized in vitro has many people up in arms, there’s no evidence that it’s on track to alter the gender balance in this country: Boys and girls are nearly equally sought after, says [medical geneticist and associate chair of pediatrics Eugene Hoyme, MD]. And although some parents will terminate a pregnancy if the fetus has a genetic or developmental problem that they feel isn’t compatible with a meaningful life, different families draw this line at dramatically different points in the sand. For some, it’s too much to consider having a child with Down syndrome. For others it’s important to sustain life as long as possible regardless of the severity of the condition. Still others might choose to have a child as similar to them as possible, down to sharing disabilities such as deafness.

“Eugenics is here now,” says Stanford bioethicist David Magnus, PhD. “So what? We allow parents to have virtually unlimited control over what school their child attends, what church they go to and how much exercise they get. All of these things have a much bigger impact on a child’s future than the limited genetic choices available to us now. As long as these are safe and effective, why not give parents this option as well?”

Previously: New techniques to diagnose disease in a fetus, Better know a bioengineer: Stephen Quake and Stanford bioethicists discuss pro, cons of biotech patents
Photo by paparutzi

Ethics, Genetics, In the News, Pediatrics

New recommendations for genetic disclosure released

Genetic and genomic testing for medical purposes is becoming increasingly common. But what should a doctor do if a patient undergoing testing for a disease-causing mutation in one gene is discovered to have another, unrelated mutation for a different, unsuspected condition? The American College of Medical Genetics and Genomics today issued recommendations regarding this very situation (called an “incidental finding”). The results may surprise some people.

ScienceInsider summarized the results nicely in a post earlier today:

Fourteen genetics experts, with the backing of the American College of Medical Genetics and Genomics (ACMG), are proposing a radical shift in how and what patients learn about what’s in their DNA. They argue that anyone whose genome is sequenced for any medical reason should automatically learn whether 57 of their genes put them at risk of certain cancers, potentially fatal heart conditions, and other serious health problems. The information would be provided whether [or not] patients want it—and often when they’re seeking care from a doctor for something else entirely—because, the experts say, knowing the makeup of this DNA could save an individual’s life. The recommendations apply to sequencing children’s DNA as well, even if there’s no preventive care available until adulthood.

Stanford genetic counselor Kelly Ormond was a member of the task force that came up with the guidelines. She elaborated the thinking of the group and the reasons behind the changes to me in a recent conversation:

We believe that there are a number of conditions that a patient would wish to know about, including BRCA1, colon cancer risk and others. This information should be given regardless of the age of the patient because it’s useful information. If the patient is a child, it’s possible that steps can be taken to reduce the risk or to incorporate screening to detect the disease as the child matures. There’s another reason, though. If a child has a mutation that clearly confers increased risk, it’s likely that he or she inherited that mutation from the parents. Informing the parents of their child’s mutation may allow them to undergo relevant screening, and hopefully keep them healthier, as well.

The college’s recommendations are just that: recommendations. Doctors can still make their own judgment calls, or even discuss with the patient or parents prior to the test the types of information they’d like to receive (in some cases, this may mean opting for a lab to process the genetic sample that doesn’t divulge any incidental findings). And the “should be informed” list is limited to those mutations that meet two criteria: They must carry a significantly increased risk of disease and there must be something that can be done clinically to mitigate this risk. Diseases (such as Huntington’s or Alzheimer’s disease, for example) for which there is a clear genetic cause, but no treatment or cure, are not included on the list.

Previously: When it comes to your genetic data, 23andMe’s Anne Wojcicki says: Just own it, Film to document Stanford student’s decision to be genetically tested for Huntington’s disease, and How genome testing can help guide preventative medicine

Ethics, Research, Science, Stanford News, Stem Cells

Stanford bioethicist speaks out about layers of stem cell regulations

Stanford bioethicist speaks out about layers of stem cell regulations

Say you’re a human embryonic stem cell researcher (odds are, that at least some of the readers of this blog fit this description). If so, you’re familiar with the alphabet soup of regulations that govern this type of research in California and elsewhere. In particular, depending on the specifics of your proposed experiments, you may need to seek approval from your Institutional Review Board (the IRB), your Institutional Animal Care and Use Committee (the IACUC) and an Embryonic Stem Cell Research Oversight Committee, or ESCRO. That could change, however.

Stanford bioethicist Hank Greely, JD, spoke out yesterday in an article in Nature exploring whether all these layers of approval are really still necessary. (Greely published a commentary on the topic in the January issue of the American Journal of Bioethics.) As the article explains, ESCROs were implemented when embryonic stem cell research was still in its infancy:

To encourage responsible practices, the US National Academies issued a report in 2005 calling for the establishment of stand-alone institutional oversight committees, and within two years, at least 25 so-called ‘embryonic stem cell research oversight committees’, or ESCROs, cropped up across the country. Most of these were created voluntarily, except in the few states—California and Connecticut, as well as New York if the research is performed with state funding—that made the practice mandatory. Now, however, with hESC research widely practiced and accepted, some experts are questioning whether stand-alone ESCROs are still needed.

“As that early period of figuring out ways to implement good ethical guidelines has shifted into the more normal science of applying those concerns, the need for ESCROs has gotten smaller,” says Henry Greely, a bioethicist at the Stanford Law School and chair of California’s Human Stem Cell Research Advisory Committee. “It’s not rocket science any more. A lot of [hESC research] is pretty routine, and it doesn’t necessarily need a unique institution to deal with it.”

Greely’s no newcomer to the ethical and legal issues surrounding embryonic stem cell research. He’s been a frequent commenter here on the topic. Not all experts agree with Greely in the case of the ESCROs, but it’s an interesting discussion. As he argues:

Ultimately, the decision to maintain ESCROs or not all comes down to a cost-benefit ratio, says Greely. Streamlining committee structures won’t bring “enormous benefits,” he admits, “but I don’t think they’re trivial benefits, and what are the benefits of continuing to have ESCROs after this breaking in and bureaucratization process has worked itself out? They’re not very big.”

“It’s not saying these guys have been failures and we should get rid of them,” he adds. “It’s almost saying, ‘These guys have been so successful that they worked themselves out of a job’—and that’s not a bad thing.”

Previously: Supreme Court decision on human embryonic stem cell case ends research uncertainty, and Stanford law professor on embryonic stem cell ruling
Photo by Max Braun

Ethics, In the News, Science Policy, Stem Cells

Supreme Court decision on human embryonic stem cell case ends research uncertainty

Supreme Court decision on human embryonic stem cell case ends research uncertainty

Yesterday, the Supreme Court declined to hear the case of Shirley vs. Seblius, which challenged the federal government’s right to fund research on human embryonic stem cells. This is good news for stem cell researchers. I asked Stanford law professor and bioethicist Hank Greely, JD, about the verdict, and he told me this morning:

At last, it’s over!  To call Sherley v. Sebelius our long national nightmare is a bit of an overstatement, except as to those keenly interested in pluripotent stem cell research.  This case, filed in August 2009, should have been thrown out by October 2009.  (Ironically, the district court judge did try to throw it out then, but used what the appellate court considered the wrong approach.)   But, at long last, after 41 months of uncertainty, leavened with occasional shock and panic, the case is dead.  The Supreme Court has, not surprisingly, denied review of the decision by the Court of Appeals for the District of Columbia Circuit, which upheld the district court’s summary judgment in favor of the plaintiffs.

And so it is finally established that, no, Congress did not, in the Dickey-Wicker Amendment, as re-passed every year since 1996, try to outlaw the positions taken by the Clinton, Bush, and Obama Administration.  Funding human embryonic stem cell research does not violate the NIH appropriations provisions.  It does, however, still rest within the discretion of the sitting President.  That seems safe for the next four years; it would be good if Congress could pass legislation expressly supporting such research for the four, and eight, and twelve, years beyond that.

Greely has been outspoken about the ongoing case on the Center for Law and the Biosciences‘ blog. You can read more about the legal background of the case here and in subsequent entries.

Previously: Judge Lamberth dismisses stem cell lawsuit, Stanford law professor on embryonic stem cell ruling and Stem cell funding injunction overturned by federal court

 

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