Thank you to Alyssa Friedland  from Genetic Alliance for this press release - a momentous occasion in the field of genetics.  I have decided to issue the press release in its entire form.  You may think me biased but the arguments put forward in the statement are cogent, well thought out and they echo my own opinions.

What we need to do now is ensure that we take a responsible approach to this legislation and continue to ensure that the field of genetics is introduced into mainstream medicine ethically and to the highest clinical standards.

Elaine Warburton   www.geneticsandhealth.com

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President Bush Signs Landmark Genetic Nondiscrimination Information Act Into Law

The Coalition for Genetic Fairness (http://www.geneticfairness.org) commends President George W. Bush for signing into law today the first civil rights legislation of the new millennium, the Genetic Information Nondiscrimination Act (GINA).

GINA is the first and only federal legislation that will provide protections against discrimination based on an individual’s genetic information in health insurance coverage and employment settings.

“This is a tremendous victory for every American not born with perfect genes – which means it’s a victory for every single one us,” said Representative Louise Slaughter (D-NY). “Since all of us are predisposed to at least a few genetic-based disorders, we are all potential victims of genetic discrimination. Today marks the beginning of a new era in health care,” continued Slaughter. “Americans can finally take advantage of the tremendous potential of genetic research without the fear that their own genetic information will be used against them.”

Just a few weeks ago, GINA received overwhelming support in both the Senate, with a unanimous vote of approval, and the House of Representatives, where the legislation was passed by a landslide vote of 414-1. “Individuals no longer have to worry about being discriminated against on the basis of their genetic information, and with this assurance, the promise of genetic testing and disease management and prevention can be realized more fully,” stated Sharon Terry, president of the Coalition and CEO of Genetic Alliance (http://www.geneticalliance.org).  “We applaud our champions on the Hill who have worked tirelessly to pass this important legislation. It is now our responsibility to make sure the public knows that these new protections are in place.”

The health insurance protections offered by GINA are expected to roll out 12 months after the bill is signed, whereas the employment protections will be fully realized in 18 months.

“Now that GINA has been approved and signed into federal law by the President, American health care consumers and employees will no longer have to fear the adverse effects of being tested to determine their risk status for genetic diseases,”said Joann Boughman, Ph.D., executive vice president of the American Society of Human Genetics (http://www.ashg.org) and a member of the Coalition’s executive committee. “Once this legislation has taken effect, clinicians will be able to order genetic tests for patients and their families in a manner that ensures the full realization of the advantages of personalized medicine, while also easing patients’ concerns about the risk of genetic discrimination by insurance companies and employers based on this data.”

Specifically, the legislation protects against genetic discrimination by health insurers or employers by:

* Prohibiting group health insurance plans and issuers offering coverage on the group or individual market from basing eligibility determinations or adjusting premiums or contributions on the basis of an individual’s genetic information. Insurance companies cannot request, require or purchase the results of genetic tests, and they are prohibited from disclosing personal genetic information.

*  Prohibiting issuers of Medigap policies from adjusting pricing or conditioning eligibility on the basis of genetic information. They cannot request, require or purchase the results of genetic tests, or disclose genetic information.

*  Prohibiting employers from firing, refusing to hire, or otherwise discriminating with respect to compensation, terms, conditions or privileges of employment. Employers may not request, require or purchase genetic information, and they are also prohibited from disclosing personal genetic information. Similar provisions apply to employment agencies and labor organizations.

The Washington Post featured a series of thought-provoking articles in ‘The Science Century’ section of the newspaper. 

Here are some of my favourites:

The Post’s Joel Achenbach writes about how “the most important things
happening in the world today…[will] be happening in laboratories — out
of sight, inscrutable and unhyped until the very moment when they change
life as we know it.”
http://www.washingtonpost.com/wp-dyn/content/article/2008/04/11/AR2008041103328.html

Ronald M. Green, the author of “Babies by Design: The Ethics of Genetic
Choice,” asks, “Why should we think that the human genome is a
once-and-for-all-finished, untamperable product? All of the biblically
derived faiths permit human beings to improve on nature using technology,
from agriculture to aviation. Why not improve our genome? I have no doubt
that most people considering these questions for the first time are certain
that human genetic improvement is a bad idea, but I’d like to shake up that
certainty.”
http://www.washingtonpost.com/wp-dyn/content/article/2008/04/11/AR2008041103330.html

Michael Chorost, the author of “Rebuilt: How Becoming Part Computer Made Me
More Human,” writes about his experience with cochlear implants.  ”I see
myself as a precursor to a world in which people communicate with each
other, at great distances, in new ways, using implanted technologies that
feel as much a part of their bodies as their own hands. We can’t imagine
what that will be like, just as in 1978 no one could have imagined
broadcasting their activities to friends by using Twitter on a cellphone.”
http://www.washingtonpost.com/wp-dyn/content/article/2008/04/11/AR2008041103260.html

Nita Farahany considers the emergence of pre-crime detection technology.
“Imagine a world where the streets are lined with video cameras that alert
authorities to any suspicious activity. A world where police officers can
read the minds of potential criminals and arrest them before they commit
any crimes. A world in which a suspect who lies while being questioned gets
caught immediately because his brain has given him away. Though that may
sound a lot like the plot of the 2002 movie ‘Minority Report,’ starring Tom
Cruise and based on a Philip K. Dick novel, I’m not talking about science
fiction here; it turns out we’re not so far away from that world. But does
it sound like a very safe place, or a very scary one?”
http://www.washingtonpost.com/wp-dyn/content/article/2008/04/11/AR2008041103296.html

Christine Kenneally, the author of “The First Word: The Search for the
Origins of Language,”  asks whether humans are so special as a species
after all.  “For years, scientists believed that the parts of the human
brain that supported complex thought and language had only recently
evolved. The mental life of animals was treated as primitive and utterly
distinct from ours. But an explosion in animal research is showing that
many components of human thought are shared with other species.”

http://www.washingtonpost.com/wp-dyn/content/article/2008/04/11/AR2008041103329.html

And computer scientist and inventor Ray Kuzweil writes about how the
“exponential progression of information technology will affect our
prosperity.”
http://www.washingtonpost.com/wp-dyn/content/article/2008/04/11/AR2008041103326.html

Thank you to Emily at The Washington Post for bringing these articles to my attention.

Happy reading!

Elaine Warburton   www.geneticsandhealth.com

Geneticist Craig Venter has announced that he is creating a life form that feeds on climate-ruining carbon dioxide to produce fuel.  He disclosed his potentially world-changing “fourth-generation fuel” project at an elite Technology, Entertainment and Design conference in California. Among the audience were Al Gore and Google co-founder Larry Page.

Biofuel alternatives to oil are third-generation. The next step, Venter says, is to re-engineer existing life forms that feed on CO2 and give off fuel such as methane gas as waste.  Simple organisms can be genetically re-engineered to produce vaccines or octane-based fuels as waste.

Venter’s team is using synthetic chromosomes to modify organisms that already exist, not making new life.  The limiting part of the equation isn’t designing an organism, it’s the difficulty of extracting high concentrations of CO2 from the air to feed the organisms.  Scientists put “suicide genes” into their living creations so that if they escape the lab, they can be triggered to kill themselves.

“We have 20 million genes which I call the design components of the future,”Venter said. “We are limited here only by our imagination.”

“If they could produce things on the scale we need, this would be a methane planet,”Venter said. “The scale is what is critical; which is why we need to genetically design them.”

Venter anticipates having his fourth generation fuels available within 18 months with CO2 as the fuel stock.

Elaine Warburton  www.geneticsandhealth.com

It is universally accepted that genetic testing is here to stay and will play a major role in health management.  Common sense dictates that it is good health management to understand what diseases an individual is susceptible to, so that steps can be taken, by that individual, if they so wish, to minimize the chance of developing a particular disease or diseases.  Genetic testing, although in its infancy, will eventually be robust enough to provide those answers.

DNA testing best practice requires test results to be clearly explained to patients by a suitably qualified specialist, more often than not a genetic counselor.  If a patient is at risk of a particular disease then best practice dictates that the individual should be offered a health screening program to detect any abnormalities early…. early detection improves survival.

A recent survey by The National Human Genome Research Institute observed that the number of Americans taking advantage of precautionary DNA testing appears to be going down, and the reason is thought to be fear of genetic discrimination from health insurers and employers.

Some health experts are so concerned that they have called for new legislation to protect US citizens from being discriminated against should their DNA test reveal health risks.

A bill which was passed by the House of Representatives last year and is yet to reach the Senate, the Genetic Information Nondiscrimination Act, would prohibit insurers from denying benefits or raising premiums as a results of genetic information, and it would prohibit employers from collecting or making use of genetic information for hiring, firing or compensation decisions.

Another trend that could be fuelling this concern is the rising use of home test kits for DNA. You send a DNA sample to a private service that sends the results directly to you, without your doctor or anyone else knowing about it.

There are advantages and disadvantages to this. On the one hand, it gives people increasing control over their own medical data, but on the other hand, if people want help, but are frightened of the consequences, it could develop into a public health crisis with people denying themselves prompt care and not revealing conditions until symptoms have progressed.

In a recent article, commenting on these latest findings, The New York Times reports experts saying that the benefits of the increasingly personalized approach to health care are being lost because Americans are too afraid of the potential consequences to take advantage of it. Doctors say people can make better informed decisions about their health if they know what risk factors they may have inherited, for instance breast cancer or colon cancer, but this advantage is lost if they fear the consequences will leave them worse off financially.

Whether discrimination actually occurs or not is not the issue, say some health experts, because the anxiety is what needs to be addressed and the sooner the legislation is put in place to protect citizens the better. Dr Kenneth Offit, chief of the clinical genetics service at the Memorial Sloan-Kettering Cancer Center in New York, said fear of genetic discrimination was the main reason people were cancelling appointments to find out if they had cancer risks:

“It’s a tragedy that people are being scared off by this,”said Offit, “we are dealing with potential lifesaving interventions”.

Elaine Warburton  www.geneticsandhealth.com

Leon Kass served as chairman of the bioethics council charged with advising US President George W. Bush on many “hot” bioscience issues such as stem cell research and cloning.

Noted for his frankness and pretty much misogynistic ideals, once you cut through all this, his arguments do make some sense.  For example:

“There’s a large cultural bias toward progress, a belief that innovation is good innovation. …  I’m inclined to a more classically tragic view in the sense that all the good comes with some bad.”

AND

“In the biomedical area, the people who are bringing you all the novelties occupy the moral high ground. They are human­itarians. They are interested in curing disease, ending suffering, extending life. If anybody says, “Let’s go slow here,” it looks like the imposition of a narrow religious view on what is a pluralistic society, and the response is “Get your morals off my science.”"

He was recently interviewed by Discover magazine and it makes for a thought-provoking read:

http://discovermagazine.com/2008/feb/20-a-chat-with-george-w-bush.s-conscience

Elaine Warburton  www.geneticsandhealth.com