Comments on: Reproductive Genetic Screening: More Questions Than Answers

By: Biotech Trends Update — DTC Genetics: The Future of Direct-to-Consumer Genetic Testing « The Cross-Border Biotech Blog

Tue, 05 Jan 2010 16:14:06 +0000

[...] [...]

By: Wendy Kramer

Wendy Kramer — Thu, 31 Dec 2009 14:16:10 +0000

A few things:

First, the donor child that co-founded the Donor Sibling Registry is a “he”, not a “she”.

The DSR has helped to connect more than 7000 genetically related people around the world. These connections have helped to shine light on serious genetic concerns about gamete donation. The donor families with the HCM issue connected with each other on the DSR, and many other families have also been able to share and update their important medical and genetic concerns through this website, as there would be no other way to do so. In most cases, the sperm banks simply do not have records of all children born from any one donor, so it is then impossible to alert all families of a serious condition. Never mind limiting the number of births from any one donor- as there are many groups of 20, 30, 40, 60 and even over a hundred children born from donors listed on the DSR. As many donors donate at more than one clinic, tracking becomes even more difficult.

Until such a time that there is accurate record keeping by the industry, the DSR is the only way for families to share and update their information with each other. So far, three sperm banks have started alerting the DSR about donors with medical issues, so that as many families as possible can be alerted. In each case, the DSR had contact with families that the banks did not have any records of.

The DSR will be presenting at the British Fertility Society meeting next week. We invite you to view our poster entitled “The Case for Comprehensive Medical and Genetic Testing of Gamete Donors” which will be on the “Research” page of the website. We will have more than 100 medical and genetic issues that have been reported by DSR families listed. This is cause for great concern.

Also, we have just completed survey intakes of 750 offspring, 154 donors and more than 1500 parents. Look forward to some surprising research results in 2010.

By: Reproductive Genetic Screening: More Questions Than Answers Children Me

Reproductive Genetic Screening: More Questions Than Answers Children Me — Fri, 18 Dec 2009 02:36:12 +0000

[...] more here: Reproductive Genetic Screening: More Questions Than Answers By admin | category: child, child laws, children | tags: attempt, benefit, blueprint, [...]

By: Ruth Institute Blog » Donor Conceived Persons

Ruth Institute Blog » Donor Conceived Persons — Thu, 17 Dec 2009 00:00:13 +0000

[...] This article by an intellectual property lawyer reviews many of the issues surrounding genetic screening and anonymous sperm donors. If you think these are simple issues, you haven’t thought about them enough. Here is one of my favorite passages: Anonymity itself comes with a cost. One need only spend a little time on the website created by a donor child searching for her father and half-siblings to understand the pain some of these children feel at be deprived of the knowledge of their biological father’s identity. As the daughter of an anonymous donor put it on another such website, “[m]y mother’s need to have a genetic link to her child was valued, while my need to know, love and understand the father with whom I have a genetic link was not.” More than 25,000 such children, their parents, and donors, have registered at the Donor Sibling Registry, trying to connect donor children with half-siblings and fathers—up from fewer than 10,000 two years ago. [...]

By: uberVU - social comments

uberVU - social comments — Wed, 16 Dec 2009 19:42:49 +0000

Social comments and analytics for this post…

This post was mentioned on Twitter by genomicslawyer: Reproductive Genetic Screening: More Questions Than Answers http://bit.ly/7VF0gn...

By: Allison Williams Dobson

Allison Williams Dobson — Wed, 16 Dec 2009 15:58:54 +0000

Great post. Very thought-provoking. The British approach of limiting the number of families receiving gametes from any one donor seems like a no-brainer. The other questions you raise are so much more difficult.