December 5, 2022

GENETIC ANGER MANAGEMENT IN AUSTRALIA

A campaign to encourage parents to tell donor-conceived children about their origins has prompted a lively discussion in the opinion pages of one of Australia’s leading newspapers. The Infertility Treatment Authority of the state of Victoria recently launched phase two of a three-year campaign, along with the world’s first evidence- based "telling" guide. Only about a third of donor-conceived children are told, surveys suggest, and the ITA says that parents should steel themselves for negative reactions from teenage children.

This prompted a letter in The Age from a bioethicist at Monash University, Dr Giuliana Fuscaldo, a former IVF clinic employee. She argued that there was little evidence to support the need for such a campaign. Anonymous sperm or egg donation was unlikely to harm children. "There is more to families and our identity than genetics," she concluded. An egg donor also wrote saying that she had no interest in knowing anything about her offspring.

Dr Fuscaldo’s comments infuriated advocates of candour with donor- conceived children. A spokeswoman for the Australian lobby group Tangled Webs wrote "here we have a bioethicist supporting a system of genetic deception that can only be described as morally corrupt and discriminatory." Professor Eric Blyth, of the University of Huddersfield, wrote from the UK that "deceiving children about their origins is a matter of ethics and not one that needs to be justified by empirical evidence". And the author of a Canadian government report on surrogate motherhood, Juliet Guichon, weighed in, as well: "Adults have been looking after their own interest at the expense of the more vulnerable, the children".  

PRIVATE ENTERPRISE FILLS SPERM DONOR INFORMATION GAP

Where IVF is closely regulated, as in the UK, mishaps are publicised and scrutinised in the media. Where it is not, they still happen, but out of the public eye, and sometimes on a massive scale. This seems to be the story in the US, where the work of a small private company in Michigan is exposing how common errors are in the fertility industry. The opened in January to store DNA samples, mostly taken from vials of semen after women have been inseminated. The DSA wants to keep track of as many donors as possible to enable parents and children to learn about their genetic heritage and their health.

Apart from screening semen for infectious diseases, there is no central monitoring of sperm donors in the US. This means, says the founder of DSA, Kirk Maxey, that sperm banks do not verify all the information given to them. They do not routinely test for many genetic diseases. They do not even confirm that the sperm requested by a woman is the sperm which she receives. They do not track donors.

Because there is so little information, there have been few complaints so far, but some irregularities have emerged. For example, the record of a registry which enables children to meet their half-siblings united several women who had received sperm from a single donor. But DNA testing showed that one of the children had a different father. In another case, an unidentified man who donated to a clinic in Michigan has passed on a rare congenital disease to at least five children. The sperm bank has no idea how many children he has fathered.

Mr Maxey was once a sperm donor himself. But he quit when he discovered that a lab technician had stolen a vial of his sperm and inseminated herself. "I’m convinced that every conceivable misstep and perversion has happened," he says.

Some bioethicists have reservations about DSA’s plans. Arthur Caplan, of the University of Pennsylvania, says that it violates the principle of informed consent. "Surreptitiously keeping samples in a biobank without explicit consent is unethical," he says.