Collecting DNA for Human Rights: How to Help While Safeguarding Privacy
“If ever there is a justifiable use of DNA, it is the protection of victims of human rights violations and human trafficking,” says Sara Katsanis. “DNA will not be ...

With the availability of the full sequence of the human genome and those of now hundreds of other organisms, there are enormous opportunities and expectations for utilizing these sequences – and the knowledge and understanding that comes from them – to benefit the public welfare. At the same time, the rapidly increasing pace of discovery in genome sciences and the prospect of widespread use of genomic information has raised awareness of a number of potentially troubling issues for society at large, in areas as diverse as individual rights, genetic discrimination, privacy, race and gender issues, the nature of humanity, personal responsibility, intellectual property law, and national health and science policy.
This has never been clearer than it is today, as rapidly advancing and ever-cheaper technologies have made whole-genome sequencing all but routine and truly personal genomics is here. With those advances, the questions the science raises for society have only grown deeper and more urgent. Members of the IGSP Interactome are exploring these intersections between genomes and society and what they mean or might mean in the context of our personal and social lives, our health and health care, our legal and regulatory systems and our very identities.
The IGSP also houses the Center for Public Genomics (CpG), a Center of Excellence in Ethical, Legal, and Social Implications (ELSI) Research co-funded by the Department of Energy and the NIH. CpG was established to explore the value of "open science" norms and practices as well as to study the benefits and risks of intellectual property protections in genomics through historical, legal, economic and empirical research.
“If ever there is a justifiable use of DNA, it is the protection of victims of human rights violations and human trafficking,” says Sara Katsanis. “DNA will not be ...
Nita Farahany discusses the ethics of knowing your genetic information and the decision making process that leads women such as Angelina Jolie to a life-transforming double ...
Last month, GSP certificate students presented findings on noninvasive prenatal testing at the Food and Drug Administration (FDA) in Washington D.C. “Our professors wanted us to ...
Misha Angrist, an assistant professor of the practice at the Duke Institute for Genome Sciences & Policy and one of the original ten to participate in the Personal Genome ...
Charmaine Royal and colleagues found that students and professors had a favorable view of the integration of personalized information, including personal DNA testing, into classroom ...
Susanne Haga, Geoff Ginsburg and Hunt Willard found that perceived knowledge about the social consequences of genetic testing was significantly lower than the perceived knowledge of ...
In Genome Medicine, Lane Baldwin and Bob Cook-Deegan say that a widely publicized lawsuit and accompanying bad press have cast Myriad as a villain in the evolving narrative of ...
In Genetics in Medicine, Susanne Haga and colleagues say that the safe and appropriate use of new genetic tools will require a combination of new educational resources, for ...
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