Deep phenotyping research has the potential to improve understandings of social and structural factors that contribute to psychiatric illness, allowing for more effective approaches to address inequities that impact mental health.
But, in order to build upon the promise of deep phenotyping and minimize the potential for bias and discrimination, it will be important to incorporate the perspectives of diverse communities and stakeholders in the development and implementation of research projects.
By Tamar Schiff
The appeal of precision medicine is of particular significance in transplantation. Treatment options are already integrally dependent on genetic factors – the donor-recipient match – and the demand for transplantable tissues far outstrips the available supply.
And the potential is only growing. Advances in genetic and genomic studies have identified an increasing number of novel biomarkers of potential use in transplant-related care. These include predictors of disease course, graft survival, response to immunosuppression, and likelihood of disease recurrence or other complications.
With wider availability of sequencing technologies and innovations in databanking, future clinical applications in transplant care may require ever-growing considerations of the significance of genetic variants, fair access to precision medicine therapeutics and participation in research, ethical approaches to data aggregation, and social determinants of health.
This post is the introduction to our Ethical, Legal, and Social Implications of Deep Phenotyping symposium. All contributions to the symposium will be available here.
By Francis X. Shen
This digital symposium explores the ethical, legal, and social implications of advances in deep phenotyping in psychiatry research.
Deep phenotyping in psychiatric research and practice is a term used to describe the collection and analysis of multiple streams of behavioral and biological data, some of this data collected around the clock, to identify and intervene in critical health events.
By combining 24/7 data — on location, movement, email and text communications, and social media — with brain scans, genetics/genomics, neuropsychological batteries, and clinical interviews, researchers will have an unprecedented amount of objective, individual-level data. Analyzing this data with ever-evolving artificial intelligence (AI) offers the possibility of intervening early with precision and could even prevent the most critical sentinel events.
By Emily Caputo and Blake N. Shultz
As school systems consider policy options for the spring semester, both vaccination requirements and proposals to address inequities in access to education may be top of mind. However, policymakers should be aware of the possible legal challenges they may face.
The COVID-19 pandemic has created an educational crisis in the United States by disrupting the learning of millions of students across the country. School closures, remote learning, and generalized societal stress have all raised serious concerns about persistent harm to adolescent learning and development — particularly among low-income and minority students.
While the pandemic has exposed widespread inequities in educational opportunity, it has also revealed the relative inability of the courts to promote access to education. A recent California lawsuit illustrates the manner in which students must rely on state-level, rather than federal, protections to ensure equal access to education. And COVID-19 vaccination requirements, which could facilitate a return to in-person education, are likely to result in lawsuits, and may be struck down by a skeptical and conservative Supreme Court.
By Jorge L. Contreras
Since genealogy websites first went online, researchers have been using the data that they contain in large-scale epidemiological and population health studies. In many cases, data is collected using automated tools and analyzed using sophisticated algorithms.
These techniques have supported a growing number of discoveries and scientific papers. For example, researchers have used this data to identify genetic markers for Alzheimer’s Disease, to trace an inherited cancer syndrome back to a single German couple born in the 1700s, and to gain a better understanding of longevity and family dispersion. In the last of these studies, researchers analyzed family trees from 86 million individual genealogy website profiles.
Despite the scientific value of publicly-available genealogy website information, and its free accessibility via the Internet, it is not always the case that this data can be used for research without the permission of the site operator or the individual data subjects.
In fact, the online terms of use (TOU) for genealogy websites may restrict or prohibit the types of uses for data found on those sites.
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
Cross-posted from Written Description, where it originally appeared on December 18, 2020.
By Jacob S. Sherkow, Lisa Larrimore Ouellette, Nicholson Price, and Rachel Sachs
The past two weeks have been full of exciting COVID-19 vaccine news, including the FDA’s emergency use authorizations (EUAs) for the Pfizer–BioNTech and Moderna vaccines and the nationwide rollout of Pfizer’s vaccine. Choosing how to allocate access to vaccine doses has been left to individual states, leaving policymakers with difficult decisions about how to prioritize their populations, complicated in part by the federal government’s reduction in some vaccine shipments.
With a limited supply of doses, who should get the first shots? Some commentators have suggested prioritizing children early for a host of reasons, including hope about children returning to school. Last month a New York Times column asserted that “saving the most lives could mean prioritizing the vaccination of children and young adults.” But there is an important reason that kids can’t be part of the vaccine line yet: we don’t know whether these vaccines work for them. In this post, we explain why COVID-19 vaccines are only just starting to be tested in children and what policymakers can do to spur pediatric vaccine trials.
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The COVID-19 pandemic has posed an impossible set of choices for governments, forcing them to weigh the competing interests of protecting public health, ending social isolation, and safeguarding privacy and civil rights. Each of these ends offer distinct societal benefits, but without a vaccine or effective COVID treatment, governments can only accomplish two of the three at one time. South Korea provides an interesting example of the tradeoffs countries have made in pursuit of these competing objectives. The country is widely regarded as a model for successfully managing the pandemic, averaging approximately 77 new cases a day since April—roughly the equivalent of 480 cases a day in U.S. population terms. South Korea’s story is especially impressive given that, in March, the country was considered one of the biggest infection hot spots outside of China. Comparing these statistics with the actual infection rate in the U.S. illustrates the success of the South Korean approach: on November 23, 2020, the CDC reported 147,840 new cases, for a total of 12,175,921 known infections in the U.S. since the pandemic began.
Cross-posted, with slight modification, from Harvard Law Today, where it originally appeared on November 21, 2020.
By Chloe Reichel
Experts gathered last month to discuss the ethical, social, and legal implications of technological advancements that facilitate the early detection of dementia.
“Detecting Dementia: Technology, Access, and the Law,” was hosted on Nov. 16 as part of the Project on Law and Applied Neuroscience, a collaboration between the Center for Law, Brain and Behavior at Massachusetts General Hospital and the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School.
The event, organized by Francis X. Shen ’06 Ph.D. ’08, the Petrie-Flom Center’s senior fellow in Law and Applied Neuroscience and executive director of the Center for Law, Brain and Behavior at Massachusetts General Hospital, was one of a series hosted by the Project on Law and Applied Neuroscience on aging brains.
Early detection of dementia is a hopeful prospect for the treatment of patients, both because it may facilitate early medical intervention, as well as more robust advance care planning.
By Chloe Reichel
Racism was embedded in the founding of the United States and has persisted in virtually all aspects of our society through the present day.
In 2020, structural racism was made especially apparent in the disproportionate toll the COVID-19 pandemic has taken on communities of color, which can be traced back to the social determinants of health, and in grotesque displays of police violence, such as the killings of Breonna Taylor, George Floyd, Ahmaud Arbery, and Elijah McClain.
Racism is the public health issue of our time, after having been woefully un- or under-addressed for centuries. The following posts, which were published on Bill of Health this year, highlight some of the most pressing issues to confront, as well as potential ways forward.