Technology Makes It Possible To Ban Imperfect Babies From Birth, Children From School

[From article]
British scientists have been granted permission to genetically modifyhuman embryos by the fertility regulator.
The Francis Crick Institute could begin the controversial experiments as early as March after the Human Fertilisation and Embryology Authority(HFEA) gave the green light this morning.
The scientists want to deactivate genes in leftover embryos from IVF clinics to see if it hinders development.
It will only be the second time in the world that such a procedure has been undertaken and the first time it has been directly approved by a regulator. A Chinese team carried out similar experiments last year to widespread outcry.
[. . .]
Critics warn that allowing embryos to be edited opens the door to designer babies and genetically modified humans.
Anne Scanlan of the charity LIFE said: “The HFEA now has the reputation of being the first regulator in the world to approve this uncertain and dangerous technology. It has ignored the warnings of over a hundred scientists worldwide and given permission for a procedure which could have damaging far-reaching implications for human beings."
But lead scientist Dr Kathy Niakan said that the research could fundamentally change our understanding of human biology and give hope to prospective parents.
[. . .]
Currently it is not illegal to edit human embryos for research purposes although it has never been done before because they technology has not been available.
When China announced it had carried out similar experiments last year there was a widespread outcry.
A spokesman for the HFEA said: “Our Licence Committee has approved an application from Dr Kathy Niakan of the Francis Crick Institute to renew her laboratory’s research licence to include gene editing of embryos.
“The committee has added a condition to the licence that no research using gene editing may take place until the research has received research ethics approval.
“As with all embryos used in research, it is illegal to transfer them to a woman for treatment.”
[. . .]
Currently it is not illegal to edit human embryos for research purposes although it has never been done before because they technology has not been available.
When China announced it had carried out similar experiments last year there was a widespread outcry.
A spokesman for the HFEA said: “Our Licence Committee has approved an application from Dr Kathy Niakan of the Francis Crick Institute to renew her laboratory’s research licence to include gene editing of embryos.
“The committee has added a condition to the licence that no research using gene editing may take place until the research has received research ethics approval.
“As with all embryos used in research, it is illegal to transfer them to a woman for treatment.”
[. . .]
“It is the very future of the way in which societies accept persons with disabilities that is at play since such gene editing procedures infer that they should not have been brought into existence.”
Gene therapy has been available since the 1970s but it is only recently that scientists have developed technology which can snip out parts of genetic code
The technique could permanently remove harmful mutations which lead to inherited diseases like Huntingdon’s, cystic fibrosis and haemophilia, critics say it could have unexpected side effects any may damage healthy strands of DNA.

http://www.telegraph.co.uk/news/science/science-news/12133410/British-scientists-granted-permission-to-genetically-modify-human-embryos.html

British scientists granted permission to genetically modify human embryos
The Francis Crick institute will genetically edit the leftover embryos from from IVF clinics
By Sarah Knapton, Science Editor
10:00AM GMT 01 Feb 2016

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[From article]
A FEW WEEKS into sixth grade, Colman Chadam had to leave school because of his DNA.
The situation, odd as it may sound, played out like this. Colman has genetic markers for cystic fibrosis, and kids with the inherited lung disease can’t be near each other because they’re vulnerable to contagious infections. Two siblings with cystic fibrosis also attended Colman’s middle school in Palo Alto, California in 2012. So Colman was out, even though he didn’t actually have the disease, according to a lawsuit that his parents filed against the school district. The allegation? Genetic discrimination.
Yes, genetic discrimination. Get used to those two words together, because they’re likely to become a lot more common. With DNA tests now cheap and readily available, the number of people getting tests has gone way up—along with the potential for discrimination based on the results. When Colman’s school tried to transfer him based on his genetic status, the lawsuit alleges, the district violated the Americans With Disabilities Act and Colman’s First Amendment right to privacy. “This is the test case,” says the Chadam’s lawyer, Stephen Jaffe.
[. . .]
When the family first sued the school district in 2013, a district court dismissed the case. The Chadams appeal the dismissal to the federal Ninth Circuit court in January. The Departments of Justice and Education have also written a brief in support of the Chadam’s case, which suggests the federal government has taken an interest in the case and its outcome.
[. . .]
To experts in genetics law, four letters are conspicuously missing from the legal wrangling: GINA, or the federal Genetic Information Nondiscrimination Act of 2008. GINA bars genetic discrimination in just two cases: employment or health insurance. That obviously doesn’t include getting education and housing and plenty of other situation where discrimination might happen. “This case is an useful reminder about the limitations of the federal statute,” says Jennifer Wagner, a lawyer and contributing editor toGenomics Law Report. That’s why the Chadam’s case does not rest on GINA but the ADA, where its application to genetic discrimination is untested.
[. . .]



Back in 2001—before GINA passed—the railroad company Burlington Northern Santa Fe was looking for genetic markers for carpal tunnel syndrome in its workers who filed for worker’s comp. (The workers claimed their carpal tunnel syndrome came from operating BNSF machinery; the company was clearly looking for another excuse.)
The US Equal Employment Opportunity Commission filed suit on behalf of the workers, and they eventually reached a settlement in 2002. The workers got $2.2 million—but because the suit ended in a settlement rather than a court decision, it did not establish a legal precedent for the ADA covering discrimination based on genes. The outcome in Chadam’s case could, if a trial goes forward, spell out exactly who gets to access genetic information and what decisions can be made based on it.
In the fifteen years since Colman got a DNA test as a baby, tests have only gotten cheaper and more popular. You have 23andMe’s $199 spit test, of course, but also the National Institutes of Health pumping $25 million into baby sequencing studies. “As we do more screening earlier and earlier in life, there’s potential for misuse of information in ways that are harmful, that could potentially discourage parents from seeking genetic testing even if it’s medically indicated,” says Michelle Lewis, a pediatrician, attorney, and research scholar at the Johns Hopkins Berman Institute of Bioethics. The genetic discrimination future is here.

http://www.wired.com/2016/02/schools-kicked-boy-based-dna/

DNA GOT A KID KICKED OUT OF SCHOOL—AND IT’LL HAPPEN AGAIN
Sarah Zhang

02.01.16 7:00 AM