Genetic Information Nondiscrimination Act
I am thinking out loud here, about stuff I know little about, but freaks me out a little!
Discrimination based on genetic predispositions to disease? Genetic chauvinism was something I witnessed in Japan, particularly against the hibakusha. People avoid marrying hibakusha because a belief that radiation sickness or genetic defects will be passed through family blood lines. The Japanese are big on blood lines. Hibakusha are also discriminated against by employers, and are socially ostracised.
In the US a new federal law was passed against the discrimination on the basis of genetic background. Is castism and racism not already a form of genetic discrimination? And what of the prejudices we will witness from transhumanists who are proponents of body enhancements who will eventually economically, physically and socially differentiate or favour based on those enhancements?
I marvel at the privacy issues around heath information. I consider that most sacred of information safe guarding as an indicator of socio-health discrimination. Instead of addressing the social misconceptions around disease, we hide our personal data to avoid the social implications of dealing with the potential results of healthhism or diseaseism. Instead we hide behind the veal of health purity and physical perfection via non-disclosure. Members of the disabled community have lobbied for the cultural acceptance of their physical form, but what of the cultural acceptance of what we cannot see - genetic predispositions. Autism for instance, with manifestations that are not always physically obvious, is the poster ability/disability (I speculate because it is one that affects boys mostly and is associated with savants or genius like qualities which we all like and therefore it gains societal acceptance and even reverence), is being relabelled as a form exceptionalness and therefore desired. We have socially adjusted our acceptance of it as a condition and are beginning to build social structures to facilitate the inclusion of people labelled with autism into a variety of institutions, we help families, exceptionalities are instrumentally being economically harnessed and it is being popularized in television and movies in such a way that we are being inculturated to accept the behavioural bundles of traits of this sub-population as normal and we are adjusting accordingly. Schizophrenia however is not a desired condition along with many others. How do perceptions and labels change? I just finished reading Making Up People by Ian Hacking, who discusses how labelling a condition suddenly makes up groups of people who fit that label and demonstrates how labels and categories are not only made up, they are not static and dynamically. The label of homosexuality as a psychological disorder and a deviance for instance is now a genetic trait which makes the ‘condition’ more socially acceptable. These people cannot help themselves so lets accept them. This is a societal response, and a strong lobby toward redefinition and social acceptance. Now that it is a genetic predisposition, does that mean we could weed it out? Will people be tested for it in-vitro? Just like how ultra-sound is being used to eliminate girl babies in India and China? Is that genetic discrimination - having girl genes? And what of the discussion of gender classification that is physiologically being redefined, particularly with the testing of female athletes that are being labelled male. What of alchohol fetal syndrome that is been passed on between and among generations of entire aboriginal communities? What of the social implications intellectual deficiencies caused by under and mal nutrition of entire populations? How do we know who is who? What does predisposition mean? How do we go from population to individual and back? If we are continuously told we are predisposed to something do we suddenly believe it and become it? Margaret Lock for instance discusses bio-social differences, where culture doesn’t just interpret biology, it also shapes it. We have medical labelling making acceptance of once socially unacceptable traits. But what of medically unacceptable traits?
And what of people who consciously choose to risk passing on illnesses/diseases or the chance thereof to their offspring? Is that merely an individual choice? Are there larger bio-social implications to those choices? Is that eugenics thinking? The will to improve hereditary traits? Weed out the bad ones with genetic testing and improve the gene pool for us all? What are the criteria used to decide? Does this make us go more underground? How do we understand the probabilities, the science, the statistics that inform the odds? Probability can tell us something about the chance of something occurring in a population but cannot predict at the scale of the individual. What are good and bad odds? Societally, in North-America we are pretty much innumerate, so how do we judge probabilities? Are insurance companies the new arbiters? Are health care costs and time lost at work the real reasons behind genetic purification? Is it social ostracization? The fear of being associated with someone physically inferior? Is it the fear of eugenics thinking and the way it was used that thwarts the sharing of our health records? The fear of being judged as inferior or of having unacceptable traits?
What of progeneration? Some individuals and couples want, at all costs, a child of their own bodies. I have met people with incredible urges and consider this a must. Is that genetic chauvanism? is that not already genetic discrimination or differentiation? What of cultural propensities against adoption? Many would rather risk bearing a child with an illness rather than avoid that risk and adopt. Are the risks of adopting a child with an illness greater or lesser than bearing one where there is a high likeliness of passing on a ‘bad’ gene? Do kids on adoption rolls come with DNA certifications?
I do not really know what or how to think about any of these issues. I do know that I have many questions and do believe we are avoiding asking really hard questions and have no mechanisms to discuss them in a free and open way as a society. So we hide our health records because we are afraid of discrimination and judgement, and we create genetic anti-discrimination acts because we have not societally dealt with our inability to understand what is underneath our fears, and so we temper our behaviours with laws, and in the short term that is perhaps the best course of action, we continue to marry within our classes, casts and races, while that is changing somewhat, we remain innumerate which reduces our chance of a fair debate or of making informed personal decisions, we are rightly petrified of eugenics past while not creating a society that can rationally temper itself (just watch the health care debate in the US) and we have this strange belief in physical perfection which, in reality, if we are really lucky, is but a fleeting short period of time either in or teen or adult lives, one we pretend is for ever and we have somehow subconsciously decided it is what we have to all strive for perfection.
