Photograph of a button pinned to a shirt. The button reads "Fuera el aborto de codigo penal."

Sexual and Reproductive Health and Rights: A Legal and Political Flashpoint in Today’s World

Friday, October 4, the Petrie-Flom Center will host “Abortion Battles in Mexico and Beyond: The Role of Law and the Courts,” from 8:30 AM to 12:30 PM. This event is free and open to the public, but registration is required. 

By Alicia Ely Yamin

Abortion Battles in Mexico and Beyond: The Role of Law and the Courts,” hosted by the Petrie-Flom Center on Friday, October 4th, provides a critical opportunity to reflect upon the progress that has been made with respect to recognizing sexual and reproductive health and rights (SRHR) as legally enforceable rights, and the role courts have played in Mexico and elsewhere.  The event could not be more timely, as the battle lines were evident at the UN General Assembly’s Universal Health Coverage (UHC) Summit and in negotiations over the “Political Declaration of the High-Level Meeting on Universal Health Coverage.” A group of countries led by the United States wanted to remove language of SRHR from the declaration and, in turn, the priorities for UHC. That effort was ultimately defeated but the debates showed the degree of contestation that these norms face in development paradigms, as well as international and national law.

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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.

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Image of genome sequence map

Legislating Genetic Non-Discrimination: What Is GINA and Why Does It Matter?

By John Novembre, Mason Kortz, Kaitlyn Dowling

In 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.

What if the hidden code underwriting your humanity could be used to prevent you from getting approved for a mortgage? Or siphoned you into a different classroom from your peers? What if the specter of an illness — possibly years away from manifesting — kept you from getting a job? The Genetic Information Non-Discrimination Act is a law passed in 2008 aimed at protecting Americans from discrimination based on information gleaned from genetic testing. With increasing access to genetic counseling in a traditional clinical setting, as well as the growth in popularity of direct-to-consumer genetic testing (like 23andMe), GINA is more relevant now than ever.

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People in a yoga class posing together

Are Wellness-Based Insurance Products Really a Win For Everyone?

By Anya Prince 

Insurers have long been in the business of selling a variety of life insurance products to their customers, but a new trend has them promoting wellness and encouraging customers to make healthy lifestyle choices through benefits programs. John Hancock’s Vitality program, for example, offers customers a free Fitbit, savings on annual life insurance premiums, and other discounts and perks for meeting fitness goals.

Other insurers are joining in this wellness game, offering their own versions of incentives and access to wearables in exchange for fitness goals. At first blush, these programs are a classic win-win situation similar to that behind workplace wellness programs. Customers/employees get free wearables. Win! Customers/employees (ideally) live longer due to healthy lifestyle choices. Win! Life insurers/employers have customers that pay premiums for more years before they die and a claim is paid out. Win!  Read More

Consumer Genetics: To Test or Not to Test?

By Marnie Gelbart and Nadine Vincenten

Direct-to-consumer (DTC) genetic testing has entered our world with a big splash and opened the flood gates of genetic information. For over a decade, we have been out talking with people from all walks of life and listening to their storiesWhether we are speaking with scientists or non-scientists, whear excitement, concerns, ambivalence  – sometimes all three at the same time  and not surprisingly, many many questions as people try to make sense of it all.   

Susan Domchek, executive director of the Basser Center for BRCA, recalls counseling a patient with a family history of breast, ovarian, and colon cancer. This patient had taken a DTC genetic test that looked at her BRCA genes, and the results led her to conclude that she was not at risk for the cancers that had burdened her family. However, the patient did not realize that the test only looked at 3 of the over 1,000 BRCA variants linked to an increased cancer risk. And because the test did not look at other genes implicated in cancer, the physician recognized that it may have underestimated her patient’s risk. What if the patient had seen a doctor who did not understand the limitations of the test? Might she have avoided taking potentially life-saving precautions?  Read More

ancestry dna kit box

Gamete Donor Anonymity is a Myth: Q&A With Seema Mohapatra

By some accounts, 26 million people have undergone direct-to-consumer (DTC) genetic or ancestry tests. While some of the results of these tests seem might seem obvious (I turned out to be half-Hungarian and half-Ashkenazi, to no one’s surprise), there have been a number of accounts in the media of test results that have been considerably more dramatic.

Some of the more shocking — and now shockingly common — scenarios are the ones in which a consumer finds out through a DTC test that they were donor-conceived, and that one or both of the parents who raised them are not their genetic relatives. Gamete donors, who often provide genetic material (eggs or sperm) with the promise of anonymity, are finding themselves the recipients of messages from genetic children they never intended to meet.

Gamete donors could argue that they have a right to privacy. But Prof. Seema Mohapatra suggests the idea of gamete donor privacy is no longer realistic, due to the state of genetic technology.

I sat down with Prof. Mohapatra to learn more about the many ethical and legal questions DTC genetic testing raises for donors, recipients, and clinics.

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image of a genetic screen

How Might we Approach Discussions on the Implications of Using Genetic Data from a Human Rights or Social Justice Perspective?

By Alicia Ely Yamin and Jonathan Chernoguz

To complement the Petrie-Flom Center’s annual conference this year, Consuming Genetics, the Global Health and Rights Project at Petrie-Flom (GHRP) convened a small meeting of feminists, students, and other activists. On May 16, Harvard University’s Global Health Education and Learning Incubator , which co-sponsors GHRP, hosted the forum in conjunction with Marcy Darnovsky and Katie Hasson of Center for Genetics and Society (CGS).

Focusing on “Gene Editing, Ethics, Rights and Health Equity Issues,” and in particular the irrevocability of germline gene editing, the meeting began with Marcy Darnovsky, Executive Director of CGS asking, “How might we begin the discussion from [the perspective of] human rights, feminism, equity, and social justice, rather than from the science and biotechnology?”

This question echoed some of those posed during the Consuming Genetics conference, for example, by Jonathan Kahn in interrogating the equivocation of social diversity and empirical diversity in genomic research.  Read More

Image of a 23andMe saliva collection kit

Getting to Know You: The Power Direct-to-Consumer Giants Have to Understanding Our Genetics

After going back and forth for what felt like years, my curiosity won. I ordered the test and shipped off my sample. Three weeks later, the email arrived in my inbox. I logged into my online portal, scrolling past the bolded message informing of my “slightly increased risk” of Alzheimer’s Disease, instead, narrowing in on what I was looking for: how would 23andMe explain genetic risk alongside my results?

In theory, genetics offers an elegant, linear way to predict one’s future—setting up a narrative in which having “the Alzheimer’s gene” destines one to a very specific medical fate. The realities of genetics, however, are far more complex. Environmental factors, among others, mediate gene expression and diseases are usually the result of various (often unidentified) genes working together. Even considering Alzheimer’s, a disease with highly penetrant variants, my risk remains probabilistic, not destined.

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Graphical image of a genetic screen merging with algorithmic code

Do You Own Your Genetic Test Results? What About Your Temperature?

By Jorge L. Contreras

The popular direct-to-consumer genetic testing site AncestryDNA claims that “You always maintain ownership of your data.” But is this true?  And, if so, what does it mean?

For more than a century, US law has held that data – objective information and facts – cannot be owned as property. Nevertheless, in recent years there have been increasing calls to recognize property interests in individual health information. Inspired by high profile data breaches and skullduggery by Facebook and others, as well as ever more frequent stories of academic research misconduct and pharmaceutical industry profiteering, many bioethicists and patient advocates, seeking to bolster personal privacy and autonomy, have argued that property rights should be recognized in health data. In addition, a new crop of would-be data intermediaries (e.g., Nebula Genomics, Genos, Invitae, LunaDNA and Hu.manity.org) has made further calls to propertize health data, presumably to profit from acting as the go-betweens in what has been estimated to be a $60-$100 billion global market in health data. Read More

Cartoon image of a protein attached to a DNA double helix that has been spliced

Regulation of Human Genome Editing in the Dawn of the CRISPR Era

By Scott J. Schweikart

With the advent of CRISPR and the first babies born with edited genomes, gene editing technology is now cheaper and more accurate than it has been. And there is now a verifiable occurrence of heritable genome modification using CRISPR.

As such, human genome editing is naturally (and quite rightly) receiving world-wide attention. Scientists, bioethicists, lawyers, and policy makers are questioning what is the best course of action in the face of this new technology that promises great medicinal benefits, but also poses great and unknown risks. Read More