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Ethical Issues in Genomics

The Hastings Center conducts research and produces public engagement activities on a wide range of ethical questions in genomics. Ethical questions raised by genetics are among the Center’s foundational issues, as explained by our President Emeritus Tom Murray in this article. Our publications include works on various aspects of genomics such as gene editing, gene drives, and gene therapy. Our events discuss our research in this area.

Current projects

Gene Therapy’s Ethical and Policy Challenges

Several gene therapies have been approved over the last few years and hundreds more are being tested, raising hopes for patients with rare disorders, various cancers, and complex neurological diseases. But there are ethical and policy challenges on the path from research to the clinic, including: What is sufficient evidence of safety and effectiveness to justify approval of a gene therapy? How can safety and effectiveness of approved therapies be monitored in the clinic? How can these therapies be made accessible and affordable to patients?

The Center for ELSI Resources and Analysis (CERA) Human Genomics Research Hub

The Stanford Center for Biomedical Ethics and the Columbia Division of Ethics is leading a five-year expansion of their hub for research on the ethical, legal, and social implications (ELSI) of human genomics, in collaboration with The Hastings Center and Case Western Reserve University, along with multiple partner organizations. The hub—the Center for ELSI Resources and Analysis (CERA)–is funded by the National Human Genome Research Institute. A centerpiece of the project is the ELSIhub.org online knowledge portal, which facilitates the use of ELSI research findings. This project is a continuation of this program.

The Ethics of Deliberate Extinction

Genome editing provides new tools for controlling wild organisms–maybe by suppressing or eradicating populations, and even in principle by driving entire species extinct. Candidate species include the new world screw worm, which eats the living flesh of animals including human beings; mosquitos that transmit infectious diseases such as malaria; and rats, which pose public health and environmental threats to threatened and endangered species in many places. Nonetheless, the prospect of using genome editing to extinguish a wild species is inherently troubling for many people. This project aims to bring attention to this possible use and propose recommendations for how decisions about it should be made.

Selected past projects

Gene Editing and Human Flourishing

This international project focused on the potential social and ethical implications of using gene editing methods on human germline cells (sperm, eggs, and embryos), creating changes that would be passed on from one generation to the next.  A gene editing technique called CRISPR-Cas9 radically simplified our ability to change genomes. It held enormous potential for improving human health. However, it also raised such profound questions that some of the scientists who developed CRISPR-Cas9 called for a moratorium on its use in humans, providing time to consider whether and how to deploy it.

Reprogenetics: A Blueprint for Meaningful Moral Debate and Responsible Public Policy

Conducted during the period when there was a ban on the use of federal funds for research with human embryos, this project evaluated and compared regulatory approaches in the United States and abroad to research and use of reproductive and genetic – “reprogenetic” – technologies, and recommended new regulatory structures for the United States.

Sequencing of Newborn Blood Spot DNA to Improve and Expand Newborn Screening

To manage expectations and guide the appropriate adoption of genetic sequencing in newborns, The Hastings Center worked on this project with a team at University of California, San Francisco, to identify and examine the ethical, legal, and social implications of the application of genome sequencing in newborns.

Understanding “Engagement” in the All of Us Research Program

This project examined the recruitment and retention of participants for the National Institutes of Health’s All of Us Research Program, an unprecedented initiative to collect genetic and other health-related data from at least one million people living in the United States with the ultimate goal of identifying ways to provide individualized care.

All of Us Research Program: Barriers to Caring for Patients with Genetic Findings that Require Medical Attention

The opportunity to find out health-related genetic information about themselves was a key motivation for many people who volunteered for the National Institutes of Health’s All of Us Research Program, an unprecedented initiative to collect genetic and other health-related data from at least one million people living in the United States. However, the prospect of returning genetic information was wrought with anxiety among clinics serving uninsured and underinsured patients because of barriers to accessing follow-up care. That was a key finding from this project, Understanding “Engagement” in the All of Us Research Program.

Selected articles from our journals

Hastings Bioethics Forum

Hastings Center Bioethics Briefings (expert overviews of bioethics issues)

FAQs of Human Genomics Studies

Many genetic scientists have taken steps to pre-emptively avoid misconceptions and misapplications of their work by creating frequently asked questions (FAQs) to explain their findings in specific studies. These FAQs give the context, scope, and limitations of their research.

Our public webinars