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Collection

Ethical Challenges in Obtaining Informed Consent for Genetic/Genomic Research

Obtaining informed consent (IC) for genetic/genomic research is complicated because most of the ethical issues associated with genetic research are considerations to be disclosed by researchers and…

Collection

Abortion and the Genetic Counselor: The Impact of Restrictive Legislation on Genetic Counseling Practice

The first class of genetic counselors graduated with an M.A. from the Sarah Lawrence College in 1971; less than two years later, the Supreme Court decision in Roe v. Wade legalized abortion in all…
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Publication

Three decades of ethical, legal, and social implications research: Looking back to chart a path forward

More than thirty years ago in the United States, the National Center for Human Genome Research (NCHGR) at the National Institutes of Health (NIH) and its partner in the Human Genome Project (HGP),…
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July EFF flyer with speakers headshots

Webinar

Legal Challenges to Newborn Screening Research

Join the discussion with panelists Eric Hendricks, JD and Aaron Goldenberg, PhD moderated by Natasha Bonhomme. To continue the conversation please join fellow audience members for an informal…

Spotlight

Using a Family Advisory Council to Understand the Informational Needs of Prospective Gene Therapy Trial Participants: An Interview with the Co-PIs of the SCDGENE CERA Working Group

Sickle cell disease (SCD), characterized by severe pain crisis and progressive organ damage as well as early death, is one of the most common inherited blood disorders in the world. However, since 90…

Impact of SCOTUS's Dobbs Decision on Prenatal Genomics Research and Practice

The upcoming Supreme Court’s decision in Dobbs v. Jackson Women’s Health is likely to change the landscape of clinical practice in prenatal genomic medicine. With the prospect of overturning Roe v.…

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Collaborators

Stanford Medicine Stanford Center for Biomedical Ethics
Columbia University Department of Medical Humanities, and Ethics Division of Ethics Logo
The Hastings Center Logo
Personal Genetics Education Project Logo