Uncertainty and Immutability: Arguments for Genetic Nondiscrimination

By Kaitlyn Dowling, based on research by the Cyberlaw Clinic at the Berkman Klein Center for Internet & Society

Illustration of a gavel made out of a DNA helixIn a year-long series on Bill of Health, we’ll be exploring the legal scholarship on genetic non- discrimination. We’ll talk more about GINA and state laws protecting citizens from genetic discrimination. We hope these posts help shed light on this complex and ever-more-relevant area for legal scholars, policymakers, and the public at large. Read the previous posts in the series.

We’ve covered the history of genetic non-discrimination legislation and the potential risks of being discriminated against in housing and lending and education based on genetic data. Those risks are clear: there are many reasons why a bank, landlord, or school might want to take a person’s genetic information (and, thus, their potential future health) into account. Let’s take a deeper dive into two broad arguments in favor of strong privacy protections for genetic information and their consequences.

 

Uncertainty

A common policy argument in favor of genetic non-discrimination legislation is that genetic discrimination is unjust because the outcomes implicated by one’s genes may never manifest. In 2001, President George W. Bush stated that “[g]enetic discrimination is unfair to workers and their families. It is unjustified – among other reasons, because it involves little more than medical speculation. A genetic predisposition toward cancer or heart disease does not mean the condition will develop.” Read More

Illustration of a man and a woman standing in front of a DNA helix

The End of Privacy?

By Rachele Hendricks-Sturrup

“Any idea we had about privacy is over,” says Dr. Julia Creet, leading international scholar in Cultural Memory Studies, Professor of English at York University, and author of the upcoming book, The Genealogical Sublime. In 2017, Dr. Creet received a York Research Leader Award in part for her investigative work and documentary entitled, “Data Mining the Deceased: Ancestry and the Business of Family,” which received critical acclaim and is streaming on demand in the U.S., Canada, and abroad. Dr. Creet also received a York President’s Research Impact Award in 2019 for her research on digital privacy, data mining, genealogy, and memory.

Dr. Creet’s work builds on Bill of Health’s key ethical and legal discussions around the direct-to-consumer (DTC) genetic testing and health data privacy. Dr. Rachele Hendricks-Sturrup, genetics and privacy scholar and research fellow at Harvard Pilgrim Health Care Institute and health policy counsel at the Future of Privacy Forum, recently sat down with Dr. Creet to discuss emerging issues and concerns about genetic privacy (or a perceived lack thereof) in an increasing information and genealogical age. The following interview has been edited for length and clarity.

 

Dr. Rachele Hendricks-Sturrup: Regarding genealogical recording in the era on increasing DTC genetic testing, you’ve mentioned in your upcoming book, “Any idea we had about privacy is over.” Tell us a little more about your thoughts here. Read More

Black and white photo of a line of dominoes toppling over

The (Possible) “Dark Side” of Gene Editing Technologies

By Shelly Simana

Gene editing technologies enable people to directly change their DNA sequence by adding, removing, or replacing DNA bases. Today, for the first time, as Jennifer Doudna and Samuel Sternberg announced in their book, A Crack in Creation: Gene Editing and the Unthinkable Power to Control Evolution, people “possess the ability to edit not only the DNA of every living human but also the DNA of future generations” (p. xvi). The emergence of new gene editing tools, such as CRISPR-Cas9prime editing, and dubbed SATI, has led to momentous advances in biotechnology as the new tools make gene editing faster, easier, less expensive, and more precise than ever before.

While gene editing technologies offer great promise, they may also introduce risks with far-reaching consequences. This post focuses on the possible “dark side” of gene editing technologies and addresses some threats that the technologies might pose to human lives. While nowadays some of those risks would be deemed “science fiction,” they should be in the back of our minds as we ponder the potential impact of gene editing technologies.

Gene Editing as a Weapon of Mass Destruction Read More

A family of four, two parents and two children, walk down the beach together at sunset.

The (Ante-Mortem) Interest in Genetic Continuity

By Shelly Simana

Omri Shahar was killed in a car accident when he was 25 years old. At his death, Omri’s parents petitioned the Israeli family court for posthumous sperm retrieval. The request was approved yet, one year later, they submitted an additional request—to use the sperm to fertilize a donated egg, implant the embryo in a gestational carrier, and raise the child. The basis of their request was Omri’s interest in “genetic continuity.” This interest is about individuals’ desire to leave a “piece” of themselves in the world and maintain a chain of continuity. It is about perpetuating one’s genes to future generations as a liberal expression of personal identity and a communitarian expression of family heritage. Read More

DNA sequence

How the Internet and The Mapping of the Human Genome Disrupted the Teaching of Health Law: Does The 21st Century Really Change Everything?

This piece was part of a symposium featuring commentary from participants in the Center for Health Policy and Law’s annual conference, Promises and Perils of Emerging Health Innovations, held on April 11-12, 2019 at Northeastern University School of Law. The symposium was originally posted through the Northeastern University Law Review Online Forum.

Promises and Perils of Emerging Health Innovations Blog Symposium

We are pleased to present this symposium featuring commentary from participants in the Center for Health Policy and Law’s annual conference, Promises and Perils of Emerging Health Innovations, held on April 11-12, 2019 at Northeastern University School of Law. As a note, additional detailed analyses of issues discussed during the conference will be published in the forthcoming issue of the Northeastern University Law Review.

Throughout the two-day conference, speakers and attendees discussed how innovations, including artificial intelligence, robotics, mobile technology, gene therapies, pharmaceuticals, big data analytics, tele- and virtual health care delivery, and new models of delivery, such as accountable care organizations (ACOs), retail clinics, and medical-legal partnerships (MLPs), have entered and changed the healthcare market. More dramatic innovations and market disruptions are likely in the years to come. These new technologies and market disruptions offer immense promise to advance health care quality and efficiency, as well as improve provider and patient engagement. Success will depend, however, on careful consideration of potential perils and well-planned interventions to ensure new methods ultimately further, rather than diminish, the health of patients, especially those who are the most vulnerable.

In her post for the Promises and Perils of Emerging Health Innovations blog symposium, Jennifer S. Bard addresses many of the negative impacts of new health technologies, particularly as they apply to patient privacy. Bard points to special concerns in how we use health information related to DNA, mental health, and chronic illness. Throughout her piece, Bard also highlights the fact that law has not caught up to changes in technology and privacy issues, which causes more concern about how society and the healthcare system use these innovations.

How the Internet and The Mapping of the Human Genome Disrupted the Teaching of Health Law: Does The 21st Century Really Change Everything?

By Jennifer S. Bard

Read More

Illustration of a street lined with houses

Genetic Discrimination in Housing and Lending: What’s the Risk?

By Kaitlyn Dowling, based on research by the Cyberlaw Clinic at the Berkman Klein Center for Internet & Society

Illustration of a gavel made out of a DNA helixIn a year-long series on Bill of Health, we’ll be exploring the legal scholarship on genetic non-discrimination. We’ll talk more about GINA and state laws protecting citizens from genetic discrimination. We hope these posts help shed light on this complex and ever-more-relevant area for legal scholars, policymakers, and the public at large. Read the previous posts in the series.

Nondiscrimination in Housing and Lending

Most states regulate the use of genetic information in some way, but protections are typically limited to employment and insurance. To most people, those two areas of protection seem obvious: it’s easy to see why your health insurer would want to know if you’re likely to become expensive to cover. Likewise, you can also understand why potential employers would want to know if they’re about to hire a worker who’s likely to need significant time off to attend to health issues. Only a select number of states ban genetic information discrimination in other contexts, like education, disability insurance, and life insurance.

Read More

The letters A, G, C, T in different colors repeated on a white background

The Birth of GINA: An Interview with Jeremy Gruber

By Kaitlyn Dowling

Illustration of a gavel made out of a DNA helixIn a new, year-long series on Bill of Health, we’ll be exploring the legal scholarship on genetic non-discrimination. We’ll talk more about GINA and state laws protecting citizens from genetic discrimination. We hope these posts help shed light on this complex and ever-more-relevant area for legal scholars, policymakers, and the public at large.

The following is an interview with Jeremy Gruber, Senior Vice President at Open Primaries and the former President and Executive Director of the Council for Responsible Genetics. Jeremy Gruber led the passage of the Genetic Information and Nondiscrimination Act and other state-based genetic nondiscrimination legislation. As part of our series on GINA, he offered insights into GINA’s creation and what the future may hold for genetic nondiscrimination. The following interview has been lightly edited for length and clarity.

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Scientist analyzes DNA gel used in genetics, forensics, drug discovery, biology and medicine

Screening vs. Diagnostics: Can Preventive Genomics Clinics Help Healthy Patients?

By Emily Quian

Preventive health clinics at large academic medical centers are one of many changes that allow individuals to be in the driver’s seat of their own health care. While many of these programs have existed for quite some time under the guise of an “executive health clinic” or “executive health services,” the introduction of preventive genetic testing in these clinics is relatively new. Furthermore, there are also clinics dedicated to the specialized area of proactive genomic screening opening up to the general public (who can afford self-pay appointments and testing). Test offerings at these clinics often comprise a suite of screening genetic tests, which differ largely from diagnostic tests.

Read More

Genetic Discrimination in Education: What’s the Risk?

By Kaitlyn Dowling, based on research by the Cyberlaw Clinic at the Berkman Klein Center for Internet & Society

Illustration of a gavel made out of a DNA helixIn a new, year-long series on Bill of Health, we’ll be exploring the legal scholarship on genetic non-discrimination. We’ll talk more about GINA and state laws protecting citizens from genetic discrimination. We hope these posts help shed light on this complex and ever-more-relevant area for legal scholars, policymakers, and the public at large.

As discussed in our last post, most states regulate the use of genetic information in some way, although usually only in employment and insurance. Comparatively few states have protections against genetic discrimination in other contexts. Today, we’re exploring education protections in eight states: California, Illinois, Massachusetts, Michigan, Utah, Virginia, Washington, and West Virginia.

In comparison with other genetic non-discrimination protections, most states have not acted to implement protections in the education context. California, West Virginia, and Washington are the only states out of the eight surveyed with these types of protections.

Read More

Photograph of surrogate showing parents-to-be ultrasound pictures

What happens when assisted reproductive technology agreements break down?

By Sarah Alawi

My name is Sarah Alawi; I’m an LLM Student at Harvard Law School, from New Zealand. I am excited to contribute to the Petrie-Flom Blog as a Petrie-Flom Student Fellow. My area of interest is assisted reproductive technology (ART), although I intend to use this forum to write on a broad range of medico-legal issues in the bioethics sphere. This post introduces my specific research interest in ART disputes, and concludes with a recommendation for anyone considering ART.

ART is a growth industry and yet, despite the sophistication of new birth technologies, its use depends on functioning human relationships. Commonly, parties try to define these relationships using pre-conception ART agreements. During my fellowship at the Petrie-Flom Center, I intend to write a thesis on what should happen, in terms of the parties’ rights at law, when three common forms of ART agreements break down:

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