Privacy and prejudice in the genetic age
Imagine a dystopian future where genetically engineered babies give rise to a superior strain of humans who eventually dominate the world. Naturally conceived children are perceived as substandard and pushed to the fringes of civilized society.
It’s what we imagine when we watch science fiction films. But with the mapping of the human genome, and greater identification of specific genes that give rise to a medical predisposition, it’s a reality that some are taking very seriously.
In 2008, the U.S. introduced the Genetic Information Non-discrimination Act (GINA), legislation intended to prevent insurance companies from denying coverage based on a genetic profile and prohibit the use of such information in making hiring, promotion or firing decisions.
Some insurance companies argue that rates are already determined based on detailed medical profiles and check-ups which are used to predict the relative risk of morbidity and mortality. Failing to factor genetic information into the analysis, they say, means the risks of genetic carriers of serious diseases are disproportionately borne by everyone.
Those who argue in favour of legislation point to the need to foster greater research into genetics. Apprehension about genetic discrimination prevents individuals from donating or consenting to the use of materials in research and biobanks
require comprehensive participation to advance the field.
Meanwhile, to address these problems, Canada has introduced Bill S-201 – the Genetic Non-Discrimination Act, which would add genetic discrimination to the Canadian Human Rights Act. (A similar statute, Bill 127, has been introduced in Ontario.)
The challenge is that we have so much more to learn. We are quickly realizing that almost every genetic trait contains multiple alleles (variant forms of a gene), often with complex interaction of many different genetic influences. These traits often don’t even manifest absent some form of environmental factors.
For insurers to accurately predict these types of risks, they would have to essentially place the equivalent of a GPS device on human beings to monitor diet, exercise and exposure to environmental influences. That level of intrusion obviously could never be justified.
That’s why any assumptions made about genetic traits are inherently flawed. Like all forms of discrimination, they are based on faulty or incomplete information from which misleading or erroneous assumptions are derived.
In our haste to apply our newfound knowledge about the building blocks of our bodies, we should refrain from the arrogant assumption that we’ve truly mastered how they work.
Legislation such as Bills S-201 and 127 could provide the necessary reprieve to come to that conclusion.
Omar Ha-Redeye is a Toronto lawyer and legal educator