DNA donors must demand stronger protection for genetic privacy
By Mason Marks and Tiffany Li,
Stat News
| 05. 30. 2018
The National Institutes of Health wants your DNA, and the DNA of 1 million other Americans, for an ambitious project called All of Us. Its goal — to “uncover paths toward delivering precision medicine” — is a good one. But until it can safeguard participants’ genetic privacy, you should decline the invitation to join unless you fully understand and accept the risks.
DNA databases like All of Us could provide valuable medical breakthroughs such as identifying new disease risk factors and potential drug targets. But these benefits could come with a high price: increased risk to individuals’ genetic data privacy, something that current U.S. laws do not adequately protect.
This month, the NIH announced it was throwing open the doors to enrollment in All of Us. This comes at a time when genetic and data privacy is in the public eye. In late April, California police caught the alleged “Golden State Killer” by using an online DNA database called GEDmatch. In mid-May, the same database was used to help solve a double homicide committed in...
Related Articles
By Emma McDonald Kennedy
| 11.24.2024
Gig work in childcare, nursing, and transportation; non-invasive prenatal testing; gene editing; and space expeditions can all be attributed to one mistaken, pervasive assumption: that “we can innovate our way out of the thorniest problems, including reproductive ones” (22). In Reproductive Labor and Innovation: Against the Tech Fix in an Era of Hype, feminist political theorist Jennifer Denbow demonstrates why the U.S. has put so much of its hopes, and its money, on technological “innovations”––and why that hasn’t addressed...
By Tamsin Metelerkamp, Daily Maverick | 11.18.2024
The National Health Research Ethics Council (NHREC) has confirmed that heritable human genome editing (HHGE) remains illegal in South Africa, after changes in the latest version of the South African Ethics in Health Research Guidelines sparked concern among researchers that...
By World Health Organization, World Health Organization | 11.20.2024
By Bernice Lottering, Gene Online | 11.08.2024
South Africa’s updated health-research ethics guidelines, which now include heritable human genome editing, have sparked concern among scientists. The revisions, made in May but only recently gaining attention, outline protocols for modifying genetic material in sperm, eggs, or embryos—changes that...