The UCSF study of heredity and environment (http://dsrstudy.ucsf.edu) will be ending on November 1st.
For those of you who have connected with half siblings, your participation is vital to the success of this study.

The first section of the survey (9 pages) is the most important because it collects crucial information about you and your family, such as demographics, behavioral characteristics and health history. It should take about 30 minutes to complete. If you have time and interest, please continue to the second section. It consists of 62 images, one per page, where you will count and recall blue circles to measure your working memory capacity. It should take 10 minutes to complete.

If you’ve partially completed the survey but do not have your validation code to continue, the survey software has been upgraded and we can now retrieve your validation code. Email Joe Lee directly at dsrstudy@humgen.ucsf.edu for your code. I hope you’ll pick up where you left off and complete the survey!

The survey is available to everyone at http://dsrstudy.ucsf.edu/survey.php.

Thanks so much!

Wendy

Fairfax Cryobank pointed me to this section of their policy to explain why they do not allow donors to know their own donor numbers:

“Donor Numbers
We stand by our policy of not releasing specific donor numbers to the donors themselves.  We believe that if we were to allow donors to have their donor numbers, we would in essence be facilitating their ability to make contact with recipient families and their offspring. Providing donors their numbers would clearly undermine our privacy policy and could possibly cause families and donors, unaware of the outcomes of sharing identifying information publicly, permanent and unwelcome consequences.”

Again, thy are clearly prohibiting mutual consent contact amongst families who desire to be in contact with each other. They are clearly prohibiting the sharing and updating of important medical and genetic information.

In my opinion: Unfathomable, unethical and irresponsible.

From another Fairfax Cryobank donor:
“I was a sperm donor at Fairfax Cryobank (the Genetics and IVF Institute) in Fairfax, Virginia, for nearly two years. I’ve made contact with them a number of times over the years (last time in 2000) asking them to make my personal contact information available to anyone who was interested in learning that I was their donor. They told me they have a strict privacy policy and that even if I waived my rights to privacy, they were still keeping all files private. I’ve made any number of inquires requesting that my “private” file be opened, but they have refused and have been unwilling to even provide me with my donor number. VERY frustrating. The doctor I had previously made contact with will no longer take my calls nor respond to my written requests. I would love to make contact with any biological offspring or parents of biological offspring who, for whatever reasons, may be searching for me or would be interested in making contact with me.”