By admin on February 07, 2013

NEW Article, February 2013: NATURE: Genetic privacy needs a more nuanced
approach, Misha Angrist.

Excerpt: “…an article in Science last month raised doubts about the privacy of
volunteers who hand over their genetic data (M. Gymrek et al. Science 339,
321–324; 2013). “Oh my God, we really did this,” said Yaniv Erlich of the
Massachusetts Institute of Technology in Cambridge to The New York Times, after
his group managed to cross-reference information from public databases to put
names to samples of DNA donated to research. One can imagine law enforcement
salivating at the prospect of turning a bloodstain into a name and address.

Yet what the scientists did is not shocking or all that new. The DNA
re-identification bogeyman has lurked at the door for years. The warning signs
were there in 2005 when a precocious 15-year-old boy called Ryan Kramer found
his sperm-donor father. Just as Erlich and his colleagues would do years later,
Kramer used a combination of Y-chromosome data — his own in this case — and
genealogical searching of public records to track down a donor dad who had
almost certainly been promised anonymity by the sperm bank.”

Read the whole story here:
https://www.donorsiblingregistry.com/dsr-support-and-info/dna-testing


By admin on January 12, 2013

“Many aspects of our health are genetically linked. According to researchers
from the Institute of Cancer Research at the University of London, there’s a 57
percent chance that a girl will start menstruating within three months of the
date that her (biological) mother began. Here are 9 other women’s health
conditions that experts say we may have inherited from our (biological)
mothers…”

http://www.rd.com/slideshows/can-you-inherit-your-mothers-health/?v=print

 


By admin on October 30, 2012
Since its creation, the Donor Sibling Registry has been focused on openness, mutual consent contact and acknowledging kinship, and the updating and sharing of medical information among families. We have also taken a strong stance for the comprehensive medical and genetic testing of donors and the ending of donor anonymity.

By contrast, most sperm banks have been chronically resistant to any move toward acknowledging kinship. Some (including Fairfax and CLI) actually withhold their own donor numbers from donors, thereby making it much more difficult for donors who do wish to establish contact, even just to update and share crucial medical information with families on the DSR. The sperm banks have also ignored or opposed calls for other much-needed reforms — for example, more accurate, up-to-date record keeping; allowing donors and families to make mutual consent contact before a child is 18; updating and sharing of all medical and genetic information; initiating comprehensive medical and genetic testing of donors; accurately tracking donors and the children being born; and placing limits on the number of children created from any one donor.

The American Society for Reproductive Medicine (ASRM) has taken a very strong stand against regulation and has argued that there is “no scientific evidence to support a cap at ten children per donor.” The September 2012 ASRM’s Mental Health Professional Group (MHPG) newsletter lists sponsorship by three sperm banks: Fairfax, Xytex, and California Cryobank. (Fairfax and Xytex continue to have the largest number of very large half-sibling groups on the DSR.) It seems to me that for the MHPG to accept funding from parties with a commercial interest in maintaining the status quo could give rise to the appearance of a conflict of interest, as well as raise questions as to whether MHPG policies, recommendations, or guidelines are in fact influenced by the interests of their sponsors. Can they fulfill their mission statement (“to promote scientific understanding of the psychological, social, and emotional perspectives of infertility patients”) with this type of sponsorship?