We recently wrote about the matter of searching one’s genetic past and some of the unusual history which that kind of testing can reveal. The Wall Street Journal’s January 3 edition informs us that in an age of advancing artificial reproduction technologies (ART) the problems are not merely historic.
In the early 1990s a New York couple struggling with becoming pregnant decided to try in vitro fertilization (IVF). They did all of those things one would expect intelligent people to do and contracted with a sperm bank in suburban Washington DC. There they found what the Journal identifies as Donor 1558; a college student.
The product was Steven Gunner, who by his parent’s accounts was all they could hope for in a child. He was active, engaged and athletic. But as he progressed into high school he began to exhibit signs of schizophrenia. For the next decade Steven’s parents lived a nightmare that culminated in his death via drug overdose at age 27.
As they struggled with their own grief Steven’s parents realized that schizophrenia may have a genetic component. Through a website, Donor Sibling Registry, they were able to identify that the sperm donor involved in the process had also been hospitalized during his childhood for schizophrenia and had overdosed on drugs, dying at age 46.
The Gunner parents now questioned whether this could all have been avoided had the sperm bank been more cautious in vetting its donor pool. The article does an excellent job of reciting how little we really know about the cause of schizophrenia. It also notes that sperm bank facilities rely almost exclusively upon the data donor’s provide together with their genetic material in exchange for a payment typically in the $100-150 range. Yes, it is possible to perform genetic testing on prospective providers but that would certainly add what could be $300-5,000 to the cost depending on the testing.
Then there is the matter of ethical baby-making. Just how far behind the screen of donor anonymity does a couple wish to go? There are genetic tests and, couples could ask to see the medical records of the sperm provider. Obviously, all of these come at the expense of anonymity. In an age when there are websites like Donor Sibling Registry or 23 and Me and when on line dating has tripled in the last decade, is anonymity still possible? These are actually some important societal issues that are easily obscured by need. Young infertile couples want children. Young single people are often in need of cash. This is not “fertile” ground for transactional ethics. If I am 19 years old and need to raise a few hundred dollars to enjoy Spring break in Florida, I know that revealing my month long stay in a psychiatric unit at age 16 is not going to win me friends at the local branch of Sperm Bank. Similarly, most young couples intent upon conceiving a child, even in circumstances where fertility is not an issue, typically skip any testing to see if one or both have genes that could produce a disabling condition. Those conditions are found at https://www.healthdirect.gov.au/genetic-disorders.
If there is to be regulation it will have to come from outside the ART world. The people brokering ART transactions are not going to want additional regulation and one suspects, they have customers at the giving and receiving end who are not well suited to evaluate the risks. Legislators in most states have been chary to intervene. But, society will bear the price of many avoidable illnesses and conditions if we insisted on better regulation of these transactions. No one has tabulated the costs incurred to support Donor 1558 and Steven Gunner during their brief lives. But chances are they were significant even before we get to the heartache experienced by their parents. In the meantime, people traveling the road toward in vitro fertilization need to ask themselves how much they want to know about the donor involved. The Donor Sibling Registry does a good job of addressing issues. https://donorsiblingregistry.com/
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