Genetic Discrimination Is Not Common
Professor Gaia Bernstein of Seton Hall Law School e-mailed me earlier today to tell me about her recent findings on the prevalence of genetic discrimination. Contrary to popular belief, genetic discrimination by insurers and employers are far from common. In her post on PrawfsBlawg, Prof. Bernstein wrote:
So why should we still be concerned? Although genetic discrimination is rare, individuals paradoxically are reluctant to submit to genetic testing. Individuals cite fear of genetic discrimination as a primary reason for not testing. Consequently, it appears that concerns about genetic discrimination are inhibiting the diffusion of genetic testing technology.
Make no mistake. Genetic information will be used to help us improve our health but also to categorize us in both harmless and harmful ways. Thankfully, we have people like Prof. Bernstein keeping an eye out for us. And I will do my best to point out the many advances we are making in genetic technology and how you can take advantage of it. Being afraid of the unknown or the uncommon won’t get us anywhere.
NB: Prof. Berstein’s abstract in the Social Science Research Network (SSRN) is interesting too. She shows that the Internet continues to grow along with privacy concerns while the opposite situation is true for genetic technology.
Technorati Tags: genetic discrimination, discrimination, genetics, genes, health, disease, dna
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8 opinions for Genetic Discrimination Is Not Common
Genetics and Health » Saturday Genetics Quiz #36: Genetic Discrimination
Apr 22, 2006 at 6:25 am
[…] Yesterday, I posted about Dr. Bernstein’s finding that genetic discrimination may not the rampant scourge that we thought. To follow up on that, this week’s genetic quiz question is: […]
Genetics and Health » Saturday Genetics Quiz #36: Genetic Discrimination
Apr 22, 2006 at 6:25 am
[…] Yesterday, I posted about Dr. Bernstein’s finding that genetic discrimination may not the rampant scourge that we thought. To follow up on that, this week’s genetic quiz question is: […]
Genetics and Health » Personal Experience with HNPCC Genetic Testing
Jun 28, 2006 at 4:33 pm
[…] The eloquent Dr. Charles has an entry about a patient’s personal experience with genetic screening for hereditary nonpolyposis colorectal cancer (HNPCC). A worthwhile read about one person’s fear of genetic discrimination despite research to the contrary. “My mother had colon cancer at an early age,” she continued in a hushed voice. “Her sister died from uterine cancer. My grandmother had some kind of kidney tumor, but we never really knew. My previous doctor picked up the pattern. He suggested I get some genetic testing to see if I had a kind of cancer gene.” […]
Genetics and Health » Rockstar Geneticists
Jul 27, 2006 at 6:23 am
[…] The obvious genetics rockstars would be Craig Venter, Francis Collins, and James Watson because they’re flamboyant, unafraid to break new ground, and frequently in the news bringing attention to the latest in the genome revolution. These three scientists and others like them have the power to influence national and international policy on genetic discrimination, genetic testing, and genetics research. […]
Genetics and Health » Genetics Interview #15: Gaia Bernstein of Seton Hall Law School
Sep 7, 2006 at 9:35 am
[…] Writing Genetics and Health over the past year-and-a-half has been a rewarding experience partly because I’ve come into contact with so many incredible people. Professor Gaia Bernstein of Seton Hall Law School is one such person. We originally met while discussing genetic discrimination between the two blogs (she used to guest blog at PrawfsBlawg). And today, I have the honor of interviewing her for the Genetics and Health interview series. […]
D.F. Zaman
Sep 19, 2006 at 9:29 am
People need to be protected from genetic discrimination. It is just as serious as racial discrimination. I know this because I have been unfortunate enough to experience it myself.
I faced serious bullying from some people who found out that my estranged father had a mental health difficulty. It was a sinister case of Nazi-like genetic determinism and discrimination. I was treated like a second class citizen even though I have no mental health difficulties myself.
In fact, I have survived a lot in my life including being a victim of crime and harassment and have coped better than most people would. I was considered to be a high achiever at school and went on to university and qualified as a secondary school teacher by the age of 22. I was given glowing reports and references all throughout school and have equally good references from employers . I have always been a very sociable and communicative person. ( I have taught communication skills successfully and worked successfully as an English teacher ). My sociable, communicative nature was frequently mentioned in my school and work references. I was often described as being sociable and popular but the bigots who bullied me tried to make me out to be an uncommunicative loner which is the total OPPOSITE of what I am.
I have since found out that the loner with poor communication skills is a typical stereotype of someone with mental health problems and this is what they were trying to forcibly label me as being! I suppose it gave them a sick, delusional sense of superiority or power to treat someone as a genetic defective ( reminiscent of Nazi attitudes)!
Many people have a parent or sibling with a special need ( whether mental or physical) but it does not necessarily mean that everyone in that family is going to have that special need! There are many cases which prove this but there is a danger that ignorant and bigoted people could try and use genetic theories to make ignorant generalisations and forcibly label people who do not have special needs in order to create a genetic underclass and thereby, boost their own fragile self-esteem.
I was so affected by the bullying I suffered that I put myself forward for psychological assessment. Three different professionals said the same thing; that I needed counselling to deal with some very difficult life experiences. The reports clearly said that I did not suffer from severe or enduring mental health difficulties and that there was no evidence of delusions or anything serious, just stress for which I needed cognitive therapy. Yet, in spite of the opinions of three professionals, the ignorant bigots in my workplace who bullied me insisted on trying to forcibly label me as something that I wasn’t simply because they’d found out that I had a parent who had a special need! There were even people making out that I was interested in aliens in order to try and make me out to be crazy. I became the object of serious, vicious and out-of-control malicious gossip. The truth of the matter is that I couldn’t give a stuff about aliens! I have never been interested in aliens, UFOs or anything of the sort! In fact, quite the opposite! Yet, these people were determined to make me out to be some sort of oddball who was interested in things that I would never think twice about!
Whatsmore, this malicious smear campaign began to affect my opportunities in terms of relationships, both friendships and romantic, as people were being frightened off by the crazy rumours that were being spread by the bullies. This was really distressing for me as prior to this, I had been used to being reasonably popular and having no shortage of people showing an interest in me romantically. Yet, suddenly, because of the vicious rumours that were being spread, I found that my quality of life was altered dramatically.
This experience was very upsetting and I know firsthand, as a result, just how far genetic discrimination can go and just how unfair and oppressive it can be. It is just as oppressive as the worst kind of racism, finding an excuse to falsely, treat someone as some sort of faulty, inferior being or second class citizen. It can degrade people and seriously limit their life opportunities in spite of their potential.
All my life, I had been used to being treated well, as an achiever, a sociable person, well able to get on with others and suddenly, when people found out about my estranged father’s difficulties, I found myself in the strange situation of being forcibly portrayed as the very opposite of all that I am with genetic theory being used as an excuse by people who were less qualified than I am, had achieved less and had not had to survive and cope with the kind of obstacles that I have coped with in my life!
From my own experience, I have learnt that without legislation and proper protection, there is a very real danger that genetic discrimination can develop into something just as sinister, damaging, demeaning and limiting as fascism/racism ( as the Nazis proved)! and I hope very much that people will be protected from this very dangerous and demeaning form of bigotry so that they will not have to suffer as I have.
Hsien Hsien Lei, PhD
Sep 19, 2006 at 5:59 pm
D.F. Zaman: Thanks for sharing your personal story. Sadly, discrimination exists in all forms whether genetics or other. All of us must stand up against it and try to be as fair as we can in everyday life. All the best!
DNA Direct Talk » Blog Archive » Fear of Genetic Discrimination
Nov 16, 2006 at 6:01 pm
[…] Why genetic discrimination is not common, and thoughts from Genetics and Health […]
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