Thursday 10 May 2012

Genetic Discrimination

As a queer man, I have been subject to bullying, abuse and discrimination on the basis of my sexual orientation or perhaps my honesty and openness about same.

As a disabled person, I have been, and still am, subject to abuse and discrimination on the basis of my disabilities and ill-health.

But have I been discriminated against on the basis of my genetic heritage?

(Image description: model of DNA by Zephyris)

Arguably, the answer is yes, insofar as genes are at least partially responsible for some of my disability and probably mainly responsible for my sexual proclivities. For example: all four of my grandparents suffer/ed from arthritis, as do both parents, all my aunts and my uncle, and one of my two siblings. It was therefore highly likely I too would develop arthritis at some point. However, in my case, it was a viral form of the condition that set off my genetic propensity. So environment had some influence. Nonetheless, my genes are responsible for that predisposition and ultimate development of arthritis. The condition is sufficiently serious to mean I am disabled by it. I am discriminated against because of my disability. And thus I have been discriminated against due to my genes. One could use a similar train of thought to argue genetic discrimination via sexual orientation prejudice.

Accepting that 'genetic discrimination' has effectively occurred, what does the term actually mean from a legal perspective? Well, ah, this is where matters become thorny. There is no legal definition in the UK; although the USA has the 2008 Genetic Information Nondiscrimination Act (GINA). This latter addresses bias in the areas of health insurance and employment, but not life assurance (insurance). Over here in Blighty many disabled folk have difficulties obtaining health or travel insurance. However, it is possible to obtain, with some forensic hunting and the willingness to pay a hefty premium, or, alternatively, excluding all conditions from which one suffered heretofore. In fact, there is no legal definition in the UK. An interesting article on the UK Human Rights Blog (Should we outlaw genetic discrimination?) concludes that:

"A separate prohibition on genetic discrimination
 [their bold type and ellipsis] is probably never going to be viable. The potential for genetic discrimination is impossibly wide. It is relevant to every  commercial transaction where one party has an economic interest in the future health of the other party, such as the granting of mortgages or commercial loans. But it also extends to non-economic relationships wherever there is an interest in explaining or predicting an individual’s current or future health, such as adoption, child custody, personal injury law, or where future behaviour is important, such as in the fields of education or criminal law."

The 1997 film Gattaca (Gattaca) showcased a world where one's DNA decided one's place in society and what future, if any, one might have. Parents had embryos screened for genetic abnormalities. One's proclivities or interests were irrelevant in this world. If Beethoven, Einstein or Hawkings (all of whom had/have a disability of one kind or another) had been born into such a world, they would not have been permitted to pursue the careers they did, but condemned to a life of drudgery in dead-end jobs - and that is only if their parents were not to have had their embryos destroyed due to the potential for disability.

Embryonic screening is a whole other incipient nightmare obviously very closely interrelated to genetic discrimination. At the moment the UK's Human Fertilisation & Embryo Authority (HFEA) (HFEA) bans most screening; but gradually, its regulation of exceptions has been extending. In the future, will screening and thus embryonic destruction be permitted for: skin colour; eye-colour; gender; any potential disability; sexual orientation; criminal potential;...?

The present situation in Britain is an admixture of ad hoc rules and regulations and limited laws. As the technology develops and genetic knowledge expands, a thorough investigation and public debate of the ethical issues and legal implications needs to be undertaken.

Sooner rather than later, before the Gattacan dystopian future is upon us.

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