Genetic Discrimination is a Real Thing

I have taken a few days to reflect on this column that was published in the Globe and Mail on Tuesday, called Genetic Testing Bill Perpetuates Myths and Fears.

I’m still scratching my head over this piece’s single-minded approach. There’s no perspective offered from the community that is affected by genetic testing, only this sarcastic comment:

As Timothy Caulfield, the research director at the Health Law Institute at the University of Alberta, notes, there have been a lot of apocalyptic predictions about the evils of genetics: The decoding of the human genome (in 2003) has led to fears about designer babies, armies of clones and pervasive discrimination that creates a genetic underclass.

It is here that I must loudly protest.  My son has a genetic syndrome.  He and others in his community have experienced discrimination their entire lives, beginning with the health system where some physicians butcher the disclosure of a prenatal diagnosis to women, moving to societal discrimination directed towards my child with a genetic difference, manifested in the simple drying up of birthday party invitations and the more serious bullying in school settings.

I realize this column is about employers and insurers utilizing genetic information for discrimination.  So let’s move away from the real life examples of discrimination into the policy realm, shall we?  In our lived experience, here is where the discrimination resides:

Health care policy
Health services administered by our publicly funded health system vary wildly province to province depending on your genetic diagnosis. In my son’s case, he’s not ‘disabled enough’ to access publicly funded respite, home care programs, speech, physical therapy or occupational therapy services.  If you are fortunate enough to have money, you can only access these health services through the private system by paying out of pocket for services for your child.  It is here that the policy interpretation of the Canada Health Act fails our children.  Plus, we have stupid policies about IQ testing used to prove health care need.  That’s not discriminatory, is it?  Or is it?

Education
Well, if you want your kid with a genetic difference to learn, you’d better be willing and able to cough up the funds for private classes (or private school) because while the inclusive policies in our public education system are written to sound fantastic, there seems to be no measurement informing us how those policies are executed in the classrooms.   Again, here is an example of inconsistent application of policy in real life.  The school can’t teach our son to read, so the last batch of private programs cost us $960 for 12 sessions.  But that’s ok, right?

Social Services
Are you a parent of a child with a genetic difference and needs to or wants to work?  In British Columbia, that’s too bad!  Policy for supported childcare spots dictates that you require extra funding for your child to access childcare, and that funding is limited and also entails a waiting list that is years long!  After age 13, there is no childcare at all because everybody knows that a kid who is 13 can stay home by themselves, right?  Oh wait, maybe that’s not true if you have a kid with a genetic difference.  Oh well, too bad for you.

Families get pushed deeper and deeper into poverty because our childcare policies are not inclusive of those kids who need extra support.  Plus, adults with genetic differences are denied a livable income by our governments and my own provincial government is even so petty to take away people’s funding for bus passes.  But surely this isn’t ‘pervasive discrimination’ is it?

But Professor Caulfield tells us otherwise:

“There is little evidence to support the idea that genetic discrimination is a big problem. If it does happen, it certainly doesn’t happen on a scale that would classify it as a pressing policy dilemma,” (says) Prof. Caulfield. 

Maybe it isn’t a ‘big problem’ or a ‘pressing policy dilemma’ because people experiencing genetic discrimination are too preoccupied to speak up because they are trying to survive in the harsh landscape left in the aftermath of Canadian health care, education and social services policies. Maybe the voices of people who have genetic differences are lost in the sea of experts, who can grab a microphone more readily than someone with an intellectual disability or a speech impairment.

I’m just a mom with a BA in English, so let’s conclude with the words of Atul Gawande, who is a Rhodes Scholar and has his M.D. from Harvard Medical School:

The mistake, then, is to believe that the educational credentials you get today give you any special authority on truth.

Is there such thing as genetic discrimination?  May I respectfully suggest that instead of making broad-sweeping statements that genetic discrimination is not a big problem, you go to the source of truth:  the people themselves.   Because policy analysis is meaningless without combining it with the lived experience of real people.

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