Recreational Genomics: Will That Be A Paternity Or Cancer Test Today?

“For $200 to $300, a private company can provide consumers with a genetic profile or a risk assessment for any given disease,” explains Williams-Jones.

“At that price, a person might as well consult their horoscope.”

Although billions of dollars have been invested in human genetics in the last three decades, very few genetic diseases can be identified from a simple organic sample (inner cheek cells, a hair, a drop of blood, etc). Genes that cause breast and ovary cancers, Huntington disease, tyrosinemia, family cholesterol and other diseases can be identified after a chromosomal analysis. “But for cardiovascular disease and the majority of cancers, the information taken from our cells is insufficient,” cautions Williams-Jones.

Williams-Jones has labeled some genetic testing companies as recreational genomics: “One company offers to evaluate the potential risk of 20 or so hereditary diseases. This is completely unreasonable. Given what some people may do with this information, I find these tests a great concern.”

In the 1970s, the BRCA-1 and BRCA-2 genes were discovered, which helped reliably predict the odds of suffering from cancer for people at risk. The company that owns the rights to the discovery, Myriad Genetics, owned the patent on those tests and could have forced hospitals or diagnostic centers to pay royalties.

But that’s not how it happened. “In Canada, these tests are done without paying royalties. And the company never dared attack the Canadian government for doing so,” says Williams-Jones. 

It was society’s first victory in the commercial war on the genetics market, Williams-Jones explains, and insurance companies have since expressed little interest in the industry. “It’s not sufficiently reliable,” he says.

Still, the industry is making serious inroads with paternity testing. According to Williams-Jones up to 15 percent of people have doubts about the identity of their father. Paternity tests are 99.9 percent reliable and available everywhere from the Internet to the corner pharmacy.

Another ethical problem is the identification of sperm donors. Some 30 years after the birth of Louise Brown, the first test-tube baby, many people are asking to ID the donor of their biological fathers. In the first fertility clinics, donors had to remain anonymous. But in 2007, in Britain, the right to know one’s biological father surpassed the right of the donor’s anonymity. The result is that sperm donations are freefalling.

Professor William-Jones, who was recruited to the Université de Montréal in 2005, says he will continue to examine new bioethical frontiers as they emerge. “I collaborate with humanists, social scientists and applied scientists in order to deconstruct the complexity of new technologies and analyze the embedded ethical, social, and political values,” he says.