LISBON, PORTUGAL - 7 NOVEMBER 2017: Dr. Oz, heart surgeon & television personality speaks at the Web Summit, Lisbon.

The Dr. Oz Paradox

By Claudia E. Haupt

Why does the law sanction giving bad advice to one patient, while it permits giving bad advice to millions of YouTube or television viewers, which may result in significant physical harm?

We might call this the “Dr. Oz paradox.” Dr. Mehmet Oz, the Republican candidate in Pennsylvania’s U.S. Senate race, is a famous television personality as well as a licensed physician. But, according to one study, half of his publicly disseminated medical advice is wrong. Yet, his sizable audience may very well follow it anyway, and perhaps suffer harm as a result. Such bad advice, which could get any doctor in legal trouble if disseminated to their patients, may be given to the public at large without fear of sanction. The consequences of this sharp doctrinal distinction can be quite jarring.

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Gavel and stethoscope.

How to Assess the Impact of Medical Ethics Education

By Leah Pierson

There has been too little evaluation of ethics courses in medical education in part because there is not consensus on what these courses should be trying to achieve. Recently, I argued that medical school ethics courses should help trainees to make more ethical decisions. I also reviewed evidence suggesting that we do not know whether these courses improve decision making in clinical practice. Here, I consider ways to assess the impact of ethics education on real-world decision making and the implications these assessments might have for ethics education.

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doctor holding clipboard.

Learning from Clinical Negligence Claims: The New NHS Patient Safety Syllabus

By John Tingle

As part of its patient safety strategy, the National Health Service (NHS) in England has created the first system-wide patient safety syllabus, training, and education framework.

Education and training are fundamental prerequisites for creating a patient safety culture in any health care system. This new patient safety syllabus is both innovative and reflective, combining systems and human factors thinking.

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phone camera

Deep Phenotyping Could Help Solve the Mental Health Care Crisis

By Justin T. Baker

The United States faces a growing mental health crisis and offers insufficient means for individuals to access care.

Digital technologies — the phone in your pocket, the camera-enabled display on your desk, the “smart” watch on your wrist, and the smart speakers in your home — might offer a path forward.

Deploying technology ethically, while understanding the risks of moving too fast (or too slow) with it, could radically extend our limited toolkit for providing access to high-quality care for the many individuals affected by mental health issues for whom the current mental health system is either out of reach or otherwise failing to meet their need.

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Pen hovering over words "I agree" with check box next to it.

Unique Challenges to Informed Consent in Deep Phenotyping Research

By Benjamin C. Silverman

Deep phenotyping research procedures pose unique challenges to the informed consent process, particularly because of the passive and boundless nature of the data being collected and how this data collection overlaps with our everyday use of technology.

As detailed elsewhere in this symposium, deep phenotyping in research involves the collection and analysis of multiple streams of behavioral (e.g., location, movement, communications, etc.) and biological (e.g., imaging, clinical assessments, etc.) data with the goal to better characterize, and eventually predict or intervene upon, a number of clinical conditions.

Obtaining voluntary competent informed consent is a critical aspect to conducting ethical deep phenotyping research. We will address here several challenges to obtaining informed consent in deep phenotyping research, and describe some best practices and relevant questions to consider.

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Baby shoes.

Infants Born Through Surrogacy Contracts Cannot Be Canceled or Returned

By Katherine Drabiak

Recently, media reported that Zheng Shuang, a popular Chinese actress, commissioned two surrogates with boyfriend Zhang Hang, and then allegedly decided, seven months into the pregnancies, that she did not want to become a parent and questioned the possibility of abortion or adoption.

Zhang asserts that he has been caring for the infants in the U.S. for more than a year after Zheng abandoned the infants. Zheng has not addressed the allegations directly, and multiple facts remain unclear.

This case, and other rare similar cases, raise the question: If intended parents initiate an agreement with a gestational surrogate to create a child, can they also terminate the agreement – and pregnancy – if they no longer want the resulting child?

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Person typing on computer.

Lessons Learned from Deep Phenotyping Patients with Rare Psychiatric Disorders

By Catherine A Brownstein and Joseph Gonzalez-Heydrich

Given the potential sensitivities associated with describing (i.e., phenotyping) patients with potentially stigmatizing psychiatric diagnoses, it is important to acknowledge and respect the wishes of the various parties involved.

The phenotypic description and depiction of a patient in the literature, although deidentified, may still be of great impact to a family.

By way of example, a novel genetic variant was identified as a likely explanation for the clinical presentation of a patient in a large cohort of individuals with neurodevelopmental and/or psychiatric phenotypes, a finding of great medical interest. The research team elected to further study this candidate and collected samples for functional evaluation of the gene variant and preparation of a case report.

Because the patient had a complicated phenotype, several physicians from various specialties were involved in the patient’s care. The paper draft was circulated amongst the collaborating clinicians and researchers and ultimately shared with the patient’s family by one of their involved caregivers. This is typically not a requirement of such studies, as the informed consent process includes the subjects’ understanding and consent for dissemination of deidentified results in the scientific literature. But as a general practice, families are informed about manuscripts in process, and in this case the family had requested to be kept abreast of ongoing developments.

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Close up of a mosquito sucking blood on human skin. This mosquito is a carrier of Malaria, Encephalitis, Dengue and Zika virus.

Responsibly Developing Gene Drives: The GeneConvene Global Collaborative

By James Toomey

Researchers believe that gene drives could eliminate vector-borne diseases such as malaria, by modifying mosquito species or eradicating those that carry disease, kill off invasive species, and combat the growing problem of pesticide resistance.

A gene drive is a technique for genetically modifying entire species of wild organisms. Genetically modified individuals of the species are released into the wild, so as to raise the probability that a particular gene will be passed onto the species’ progeny via reproduction.

Over the course of many generations, the gene — even if detrimental — can spread to an entire population.

But as of now, this is all hypothetical. No gene drive has been tested in the wild, and many people are skeptical that they should ever be used.

The GeneConvene Global Collaborative, a project of the Foundation for the National Institutes of Health, was started this past July to promote the responsible development and regulation of gene drive technologies. It brings together researchers, regulators and stakeholders around the world to develop best practices for gene drive research and implementation.

Because of my prior writing on this topic, I participated in GeneConvene’s fall webinar series and spoke with scientists there about the project. Read More

Doctor and patient.

Previvorship and the Legal Doctrine of Informed Consent: Video with Valerie G. Koch

The Health Law Policy, Bioethics, and Biotechnology Workshop provides a forum for discussion of new scholarship in these fields from the world’s leading experts.

The workshop is led by Professor I. Glenn Cohen, and presenters come from a wide range of disciplines and departments.

In this video, Valerie Gutmann Koch gives a preview of her paper, “Previvorship and the Legal Doctrine of Informed Consent,” which she will present at the Health Law Policy workshop on November 23, 2020. Watch the full video below: