May 11, 2009

Denied over DNA

Sperm (The DNA)
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Denied over DNA
Tom Blackwell, National Post

A B.C. woman who was adopted as a baby has launched a potentially groundbreaking human-rights case, arguing the anonymity of her birth family has effectively denied her the chance to undergo a genetic test for cancer.

The outcome of her complaint could be felt widely, said one legal expert, offering new ammunition to those battling the secrecy that often surrounds adoption records and the sperm and egg donors used in reproductive technology.

Judith Johnson won an early legal victory recently, when a human-rights tribunal said there was merit to her allegation she was discriminated against based on being an adoptee.

Ms. Johnson takes a drug that may make her more vulnerable to cancer, and her doctor suggested she undergo testing to determine if she has genetic abnormalities indicating an even higher risk for breast and ovarian malignancies.

Under B. C. Cancer Agency rules, however, she could only receive the $1,200 procedure if she was able to show that the cancers were prevalent in her family. In Manitoba, where she was adopted, most adoption records are closed and she could obtain only minimal information.

"This is hugely, hugely important to Judith," said Devyn Cousineau, Ms. Johnson's lawyer.

"She has been trying a million different ways to get the tests done. She wants to know what her risks are for cancer.... The longer she is delayed, the more psychological and emotional stress she will have to endure."

The case comes as Ontario is about to open its adoption records to adult adoptees and birth parents, so long as neither party files a veto to curb access.

When the change takes effect on June 1, Ontario will join three other provinces -- B. C., Alberta and Newfoundland -- that already have similar systems in place.

The situation is much different in the other six provinces, though.

Manitoba implemented a law in 1999 that opened records for new adoptions, but those that occurred earlier are still closed.

The other five provinces' adoption records remain shut, too.

Meanwhile, a class-action lawsuit is seeking to end the anonymity around the men and women who donate eggs, sperm and embryos for in vitro fertilization and other reproductive technology.

With more and more children born as a result of such procedures, and more genetic tests coming on line to help in disease prevention, Ms. Johnson's case looks particularly significant, said Juliet Guichon, a lawyer and bioethics professor at the University of Calgary.

"She's raising an important issue: How do people who don't know their origins get access to this type of preventive health care?" Ms. Guichon said.

"This could become an increasingly important area, particularly since more and more children are being raised in ways that don't allow them to know their genetic origins."

Ms. Johnson did appeal to Manitoba authorities for details of her medical background.

But she received only perfunctory information on her biological mother and nothing on her father or other blood relatives, Ms. Cousineau said.

Other provinces with closed records will also provide some information if they feel the medical concerns are serious enough.

But asking for it is a difficult and drawn-out process that often ends with little useful information, say open-adoption advocates.

"Imagine being told you cannot have the information, and it's about you, it's your DNA," said Karen Lynn of the Canadian Council of Natural Mothers.

"It's totally unfair."

Ms. Johnson's complaint, though, is actually against the B. C. Cancer Agency, alleging the organization failed to recognize the special circumstances faced by many adoptees. The agency should have made its decision based on other factors, said her lawyer.

Her doctor recommended the genetic test for the BRCA 1 and BRCA 2 gene mutations -- which indicate a 50% to 70% chance of contracting breast cancer -- because she was taking a TNF-blocker drug for rheumatoid arthritis. The medicine may itself boost a patient's cancer risk.

The cancer agency usually provides the test to women who have contracted breast cancer at an early age or ovarian cancer at any age, have a strong family history of the cancers, or where another close family member has already tested positive for the mutations.

The agency argued that it denies tests to people who cannot access family history for other reasons, too, such as being orphaned at a young age, and does not discriminate against adoptees.

It is important to limit the test to those who are most likely to benefit, Andrew Coldman, an agency administrator, said in an interview.

In its decision earlier this year, though, the human-rights tribunal rejected the organization's arguments and its request that the complaint be quashed.

"As an adoptee with no access to her genetic medical history, she has no possibility of providing a living family member, affected or not," said Tonie Beharrell, the tribunal judge, giving approval for a full hearing.

The agency has appealed the decision to the B. C. Supreme Court.

Dr. Philip Wyatt, a geneticist with York Central Hospital in Newmarket, said he agrees with the B. C. agency's criteria for the tests, but called its decision in Ms. Johnson's "unique" circumstances silly and bureaucratic.

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