2019 Petrie-Flom Center Annual Conference: Consuming Genetics: The Ethical and Legal Considerations of Consumer Genetic Technologies
The call for abstracts is now closed.
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.
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 call for abstracts is now closed.
The agenda for this event will be posted here later in the fall. Potential topics include:
What can or should be done to ensure that precision medicine benefits individuals of all backgrounds? Is there an obligation to do so?
What information do individuals need to properly consent to for at home genetic testing? Does it vary depending on the purpose of the test?
How has the FDA’s regulation of these technologies shaped the market?
Do practices, statutes, and regulations pertinent to genetic information need to be revised, considering the increase in genetic testing?
Does CRISPR change the ethical debate around gene editing or merely revive it?
Should individuals who contribute to genetic databases be afforded any property or other kinds of rights in the information or their samples?
If a potential product of CRISPR is genetically modified human beings, who are presumably free to travel and have children with others, is CRISPR a technology that can be regulated at the national level or must it be regulated at the global level?
How should the regulation of gene editing be fitted with that of other cutting-edge technologies with reproductive implications like mitochondrial replacement therapies and in vitro gametogenesis?
In light of laws and regulations that attempt to allow individuals more “ownership” rights to their data, such as the GDPR, what is the right balance between facilitating an individual’s control of their genetic information and supporting research and projects that rely on big data?
How should law enforcement and courts respond to the explosion of genetic information? Law enforcement have tried to match suspects’ DNA to a database of past offenders for years, but is there something more concerning about using familial DNA to identify suspects?
Is there a “right to be forgotten” or a “right not to be commercialized” for genetic information?
This event is free and open to the public, but registration is required. Register now!
Stay tuned for the conference agenda, which will be posted in late fall 2018. Want updates sent straight to your inbox? Sign up for our e-newsletter!
Please contact the Petrie-Flom Center with any questions: email@example.com, 617-496-4662.
Sponsored by the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School.