An announcement from our friends at Harvard Law's Petrie-Flom Center
Conference date: May 17, 2019
Abstract Submissions Due: October 15, 2018
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School is pleased to announce plans for our 2019 annual conference: “Consuming Genetics: The Ethical and Legal Considerations of Consumer Genetic Technologies.” This year’s conference is organized in collaboration with Nita A. Farahany, Duke Law School, and Henry T. Greely, Stanford Law School.
Conference Description: Breakthroughs in genetics have often raised complex ethical and legal questions. Many regard their genetic testing and sequencing as revealing something intensely personal and private. The questions raised by these technologies loom even larger as genetic testing is becoming more commonplace, affordable, and comprehensive. At the same time, advances in CRISPR and other related technologies raise anxieties about the implications of editing our own DNA. One can imagine a future when gene editing may become as widespread as genetic testing is today. As genetic technologies become more accessible to individuals, the ethical and legal questions around the consumer use of these technologies become more pressing. This conference will examine some of these issues.
The rise of genetic testing has allowed individuals to gain new insights into their unique makeup. Already the global genetic testing and consumer/wellness genomics market was valued at $2.24 billion in 2015 and is expected to double by 2025. Amazon noted that Ancestry.com’s DNA test kit was one of their best-selling products on cyber Monday of 2018. The availability of these technologies inspires patients to act proactively to avoid medical conditions, such as when actress Angelina Jolie pursued a double mastectomy after genetic testing revealed that she was in the highest risk category for developing breast and ovarian cancers. The rise of direct-to-consumer genetic testing kits raises questions about the appropriate setting for these activities, however. For example, the Food and Drug Administration expressed concern about 23 and Me’s initial product offering, noting that delivering health-related results directly to consumers might cause these individuals to draw the wrong medical conclusions.
The increased ease of genetic testing and sequencing has also led to a sharp increase in genetic data and the rise of precision medicine. The rise of genetic databases raises significant ethical questions, especially around privacy concerns. In an age where serial killers are caught because their relatives chose to submit DNA to a consumer genealogy database, is genetic privacy for individuals possible? The economics here are significant. Consider the increased value of Myriad’s database of variances of unknown significance after the Supreme Court in Association for Molecular Pathology v. Myriad Genetics held that isolated genes cannot be patented. Does the aggregation of data from genetic testing turn people into products by commercializing their data? How might this data reduce or exacerbate already significant health care disparities?
While gene editing tools such as CRISPR are not yet as widely available as genetic testing technology, in some parts of the world their availability is already spreading. There have been reports that Chinese scientists have used CRISPR-Cas9 technology to genetically engineer the cells of at least 86 patients. Companies in the United States and Europe are expected to begin treating patients with CRISPR-based therapies this year. Many countries have drawn a line against germline modification, but this prohibition may be strained if gene editing technology is widely disseminated. Before we reach that point, this is the time to consider what ethical and regulatory safeguards should be implemented for when the time comes.
The full call for abstracts and registration information are available here.
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