Call For Papers
Consuming Genetics: The Ethical and Legal Considerations of Consumer Genetic Technologies
May 17, 2019, Harvard Law School
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.
CALL FOR ABSTRACTS: We seek papers that offer innovative conceptualizations and advance inventive approaches. Abstracts should focus on the fresh contributions the presentation will make, including sketches of the supporting arguments. The abstract should include (but not be limited to) a paragraph summarizing the issue that will be addressed and any currently contending views about its resolution. Successful abstracts will explicitly address how the proposed presentation will address the ethical and/or legal challenges presented by the rise of consumer genetic technologies.
TOPICS: We welcome submissions on both broad conceptual questions and more specific policy issues related to the implementation of genetic testing, precision medicine, and gene editing. 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?
Please note that this list is not meant to be exhaustive; we hope to receive abstracts related to the conference's central question even if the particular topic was not specifically listed here. Proposals should demonstrate a clear linkage to all three aspects of the conference: genetic technologies, bioethics, and law. Papers that focus on ethics should include substantial discussion of policy implications. Relatedly, law will be treated broadly to include governmental policy decisions more generally. Successful abstracts will propose or outline an argument/position, rather than merely stating a topic.
In an effort to encourage interdisciplinary and international dialogue, we welcome submissions from legal scholars and lawyers, bioethicists, philosophers, clinicians, medical researchers, disability rights advocates, public health practitioners, behavioral economists, government officials and staff, and others who have a meaningful contribution to make on this topic. We welcome philosophical and legal reflections from contributors across the world, but these submissions should be general or United States-focused rather than comparative in nature. We welcome submissions from advocacy organizations, think tanks, and others outside academia, but emphasize that this is a scholarly conference, and abstracts/papers will be held to academic standards of argumentation and support.
PARTICIPATION/SUBMISSION PROCEDURE: If you are interested in participating, please send a 1-page abstract of the paper you would plan to present to email@example.com as soon as possible, but not later than October 15, 2018. If your abstract is selected, your final paper will be due on March 29, 2019, and you will be assigned a presentation slot for the conference. All presenters must provide a full final draft in order to participate and that presenters are expected to attend the conference for its full duration. We will accept conference papers of all lengths and styles (e.g., law review, medical, philosophy, or policy journal, etc.), but presentations will be limited to 15 minutes. The conference will be held on Friday, May 17, 2019. We will pay travel expenses for presenters who must travel to Cambridge; co-authored papers must name a single presenter.
In the past, we have successfully turned several of our conferences into edited volumes (e.g., with Cambridge, MIT, Johns Hopkins, and Columbia University presses). It is possible, although not guaranteed, that conference presenters will publish their papers with us in an edited volume whose chapters will be limited to 5,000 words, including references. All presenters should plan on contributing their submission to any subsequent volume arising from the conference. Previous conference participants have been able to publish their submissions in different formats in multiple venues, for example both as a short book chapter and a longer law review article. However, the version that will be used for an edited volume should not have been published previously or be planned to publish separately.
REGISTRATION: Registration information is available here. Attendance is free and open to the public, but space is limited. Stay tuned for the conference agenda, which will be posted to our website once abstracts have been selected.
FURTHER INFORMATION: Please contact the Petrie-Flom Center with any questions: firstname.lastname@example.org, 617-496-4662.
Sponsored by the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School. LECManne@gmu.edu