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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Making an Impact: Journal of Law and the Biosciences Scores High

The Journal of Law and the Biosciences is the first fully open-access, peer-reviewed, legal journal focused on the advances at the intersection of law and the biosciences. JLB is co-edited by Profs. I. Glenn Cohen (Harvard Law School), Nita Farahany (Duke University School of Law), and Hank Greely (Stanford Law School). JLB contains original and response articles, essays, and commentaries on a wide range of topics, including bioethics, neuroethics, genetics, reproductive technologies, stem cells, enhancement, patent law, and food and drug regulation. JLB is published as one volume with three issues per year, with new articles posted online on an ongoing basis.

The Journal of Law and the Biosciences recently received a journal impact factor of 2.431, making it one of the most cited, influential journals in its fields. In fact, JLB ranks 14 out of 148 law journals and is ranked third out of sixteen in the areas of both medical ethics and legal medicine.

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Is Data Sharing Caring Enough About Patient Privacy? Part II: Potential Impact on US Data Sharing Regulations

A recent US lawsuit highlights crucial challenges at the interface of data utility, patient privacy & data misuse

By Timo Minssen (CeBIL, UCPH), Sara Gerke & Carmel Shachar

Earlier, we discussed the new suit filed against Google, the University of Chicago (UC), and UChicago Medicine, focusing on the disclosure of patient data from UC to Google. This piece goes beyond the background to consider the potential impact of this lawsuit, in the U.S., as well as placing the lawsuit in the context of other trends in data privacy and security.

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A Professional In Vitro Fertilisation Laboratory Microscope Closeup - Image

Professor: The Law Has No Straight Answer for Our High-Tech Baby Boom

This is an excerpt of an article by Alaina Lancaster that originally appeared on Law.com. Read the full interview here. 

After thousands of dollars of in vitro fertilization treatments and nine months of pregnancy, a New York couple was forced to give up the twins they birthed. It turns out CHA Fertility Center, the Los Angeles clinic where the couple sought IVF treatment, mixed up the embryos of three patients, resulting in two of the couples having to give up children to their genetic parents. Now, those parents are suing.

Dov Fox, professor of law at the University of San Diego and the director of the school’s Center for Health Law Policy & Bioethics, said the law has not caught up with reproductive technology and victims of this type of medical malpractice aren’t left with many legal options. Yet, legal frameworks are out there, Fox said. Judges and lawmakers just might need to look outside the U.S.

Read the full interview here.