graphic of DNA fingerprinting

Responsibility, culpability, and parental views on genomic testing for seriously ill children

Janet Malek, PhD
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX

Imagine being a parent and finding out your child is seriously ill.  Imagine how it feels to sit in a chair in the doctor’s office and hear the news that your child has cancer.  Imagine the worry and guilt you might feel and how these thoughts and emotions might shape your reactions to whatever comes next.

Being a parent comes with a special set of obligations to protect and promote the well-being of your child. A cancer diagnosis puts those obligations front and center, making it impossible to repress questions about what you could have done differently and what you can do to help your child moving forward.

Enter genome-scale sequencing (GS).  Both sequencing of blood – sometimes called germline sequencing (to find gene changes that the child was born with and that might be passed from parent to child) as well as tumor sequencing (to find gene changes that happen randomly in the cells of the body which may cause the tumor to develop) are being used more and more often in clinical settings.  The idea is that this genetic information will help doctors discover what caused a patient’s condition and give clues about how to treat it, even for cancer.  Parents are increasingly be given the option to have their child undergo GS as the technology becomes less expensive and more useful.

Read More

Image of binary and dna

Assessing genetic relationships between academia and industry

By Kayte Spector-Bagdady JD, MBioethics
Department of Obstetrics & Gynecology; Research Ethics Service, Center for Bioethics & Social Sciences in Medicine, University of Michigan Medical School, Ann Arbor, MI

With recent reports of Google’s data deals with Ascension health and the University of Chicago, there has been a lot of attention paid recently to the sharing and use of health data by unexpected entities.

But we know that patients are uncomfortable when hospitals “commercialize” or sell their health data or biospecimens to industry. In fact, the recent revisions to the human subjects research regulations included a specific biospecimen commercialization disclosure requirement.

Read More

close up of DNA fingerprints

DNA databases, cracking crimes, and confidentiality

By: Leslie E. Wolf, JD, MPH, Georgia State University College of Law, Interim Dean and Distinguished University Professor and Laura M. Beskow, MPH, PhD, Ann Geddes Stahlman Chair in Medical Ethics, Center for Biomedical Ethics and Society, Vanderbilt University Medical Center

In our article, Genomic databases, subpoenas, and Certificates of Confidentiality, published in Genetics in Medicine, the official journal of the American College of Medical Genetics and Genomics (ACMG), we considered the protections available to research genomic databases in light of law enforcement’s use of ancestry databases to help solve crimes.

Read More

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

Time to Ban Heritable Genome Editing

By Jeffrey R. Botkin, MD, MPH, Professor of Pediatrics and Medical Ethics at University of Utah

We are at a critical crossroad in reproductive medicine.  How should science and society more broadly manage the powerful new technologies that can alter the genes of human embryos?  In a recent paper published in Genetics in Medicine, the official journal of the American College of Medical Genetics and Genomics (ACMG), I argue that banning the use of this technology editing human embryo is the right direction.

Concerns over theoretical capabilities of “designer babies” have been with us for generations.  The ability screen and test for embryos and fetuses with undesirable characteristics and forestall their birth is well-developed and familiar. But the actual ability to add, subtract or alter genes in the embryo is quite new.  The CRISPR-Cas9 technology and related technologies burst on the scene in the last decade and the ability to relatively easily and cheaply to alter human embryos is no longer science fiction.

Read More

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