Sunday, May 27, 2007

National Discussion about Family Values

For the second time in two years I have spoken at and participated in a national discussion about family -- who we define as family, the importance (and sometimes lack thereof) of biological ties, the experiences of donor-conceived and adopted people who are missing some of their history. The conference included governmental policy makers and regulators, doctors, social workers, offspring and parents.

And for the second time in two years, this national discussion took place in Canada.

The United States, which has a multibillion-dollar industry in reproductive technology -- with donor sperm, and donor egg, and surrogates sometimes stepping in to fulfill a conception role for an aspiring parent who cannot -- has not yet had this national discussion.

Canada's former "first lady" (previously wife to the Prime Minister) spoke at this event, as did the new president of its three-month old regulatory agency for reproductive health. There was a great to-do about how long it has taken (10 years) and how much has yet to be accomplished in this area, as Canada tries to catch up with the U.K. and Australia in discussing and monitoring the potential and real ethical and social concerns involving the rapidly evolving technologies.

Yet the U.S. hasn't even STARTED a process of developing oversight of this major industry. There is no regulatory body, other than the FDA's accreditation program that ensures that tissues are stored properly.

Now, I'm not big on governmental supervision of family matters, but we desperately need to find the listening ears in Congress who will at least engage our country in a national discussion about the incredibly complex and nuanced issues that impact families who use reproductive technology. To start: why don't fertility clinics require counseling of all clients who are using donated gametes to conceive? The infertile parent, the eventual offspring, the reactions of extended family, the stigma, the fear of the donor's place in their family, the conflicts about disclosing the truth to children about their origins -- all are worthy of major discussion.

And why do we not have a registry, like other countries do, so that families can learn more about a donor's medical history over time? What 20-year-old sperm donor knows his family history of cancer and heart disease and as-yet-to-be-detected genetic illnesses? How many medical forms do we fill out from childhood on that ask for family histories -- why on earth do we still not have something in place to allow donor-conceived children and adoptive children to learn more about their own background?

My part in this recent conversation was to lead a two-hour workshop and discussion about how we define family. We all define it differently, of course, based on our own experiences. But what we need to have a national discussion about is that tens of thousands of children in our country are not sure how to define family yet -- and it's about time we start helping them.

Mikki (who traveled by ferry, car, plane and train to get to this latest conference!)


Kathy said...

So what is it we can do to help make change? Sitting back and waiting is the the answer.

LorMar said...

Will anything be posted online? I would love to watch or read about it. Hopefully, we will have a conference here in the States.

concerned heart said...

There are amazing laxities in the fertility business in the US. I know personally about them.

I will skip my own story to tell you that there is danger to health of an offspring for the father to be over the age of 33-35 at conception. Enough said I'll give you some reading material. Before I get to that I think your idea of required counseling and screening is of prime importance. No one is looking after the health of the offspring from my experience.

The most irrefutable finding is our demonstration that a father’s age is a major risk factor for schizophrenia. We were the first group to show that schizophrenia is linearly related to paternal age and that the risk is tripled for the offspring of the oldest groups of fathers.7 This finding has been born out in every single cohort study that has looked at paternal age and the risk for schizophrenia. The only other finding that has been as consistently replicated in schizophrenia research is that there is an increased risk associated with a family history of schizophrenia. Since only 10% to 15% of schizophrenia cases have a family history, family history does not explain much of the population risk for schizophrenia. However, we think that approximately one third or one quarter of all schizophrenia cases may be attributable to paternal age. Paternal age is the major source of de novo genetic diseases in the human population, which was first described by Penrose8 in the 1950s. He hypothesized that this was due to copy errors that arose in the male germ line over the many cycles of sperm cell replications. These mutations accumulate as paternal age advances. After the Penrose report, medical researchers identified scores of sporadic diseases in the offspring of older fathers, suggesting that these could occur from gene mutations. Particular attention was paid to conditions in last-born children. In the 1960s, an excess of schizophrenia in last-born children was also reported. Dolores Malaspina, M.D.