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Ethical Concerns of DNA Databases used for Crime Control

By Aziza Ahmed

Genetic databases for crime control have become a national topic for debate after the arrest of the Golden State Killer, also known by his real name, Joseph James DeAngelo.

At the time of his arrest, DeAngelo was 72 years old and had committed more than 50 rapes and 12 murders. While his arrest was celebrated as a law enforcement victory, a host of questions emerged because of the way law enforcement officials eventually found DeAngelo: through a combination of traditional detective work and utilization of data from a crowd-sourced genetic database. In this case, police searched GED-Match, a website created by the Mormon church where users can share genealogical information and find “familial” DNA matches

The Golden State Killer case reignited numerous debates on the issue of DNA searches and the use of DNA evidence, but with a twist. The big question is, should investigators utilize genetic databases, whether run by the government or by private agencies and individuals, to identify the families of suspects, if doing so will lead them to the culprit?

Though the opportunities for crime-solving by utilizing DNA database searches may be vast, new technologies and innovative uses of them do not occur in a vacuum. Instead, novel uses of technology demand consideration of a vast number of ethical issues, and mandate careful interrogation of the potential impact of DNA databases on crime control. Read More

3 Things You Should Know About the Petrie-Flom Center’s 2019 Annual Conference

Breakthroughs in genetics have often raised complex ethical and legal questions, which loom ever larger as genetic testing is becoming more commonplace, affordable, and comprehensive, and genetic editing becomes poised to be a consumer technology. As genetic technologies become more accessible to individuals, the ethical and legal questions around the consumer use of these technologies become more pressing.

We are excited, therefore, to have many major thought leaders in this space discuss these issues at the Petrie-Flom Annual Conference, “Consuming Genetics: Ethical and Legal Considerations of New Technologies,” which will take place at Harvard Law School in May. Read More

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The Luxturna Debate: Why Ethics Needs a Seat at the Drug Pricing Table

By Clio Sophia Koller

Jack Hogan can now ride his bike home at dusk after an afternoon of playing with his friends. Is that childhood rite-of-passage worth $850,000?

Recently, the Health Policy and Bioethics Consortium convened by Harvard Medical School’s Center for Bioethics and the Program on Regulation, Therapeutics, and Law (PORTAL) at Brigham and Women’s Hospital met to discuss the implications of Spark Therapeutics’ new gene therapy treatment—along with its staggering price tag.

Luxturna, a novel therapy approved by the FDA last year, treats a rare form of inherited blindness known as retinitis pigmentosa. The therapeutic agent targets the RPE65 gene, associated with the disorder, and is shown to improve vision in a population with progressive vision-loss and an inability to see in dim light. Read More