JFActivist

President Bush Signs Genetic Information Nondiscrimination Law!

From the Genetics &  Public Policy Center (May 21):

President Bush signs long-awaited Genetic Information Nondiscrimination Act

Washington, DC - May 21, 2008 - President Bush today signed into law the Genetic Information Nondiscrimination Act of 2008 (GINA), providing vital protection for Americans against the misuse of genetic test results by heath insurers and employers.

“Americans have been waiting a long time for this bill, but the wait has been worth it,” said Center Director Kathy Hudson. “Our challenge now is to make sure that doctors and patients are aware of these new protections so that fear of discrimination never again stands in the way of a decision to take a potentially life-saving genetic test.” The Center has compiled a table showing what GINA does and does not do.

Until now, individuals’ genetic information has been protected only by a largely untested patchwork of state and federal regulations. According to a poll conducted last year by the Center, 92 percent of Americans are concerned that results of a genetic test could be used in ways that are harmful to them. GINA’s passage should allay public fears of genetic discrimination, allowing individuals to take advantage of the genetic tests that are now clinically available for approximately 1500 diseases.

GINA prevents health insurers from denying coverage, adjusting premiums on the basis of genetic information, or...

...Read the rest and learn more about the new law!

COLUMN: President Should Sign Bill Outlawing Genetic Discrimination

From The Sacramento Bee (May 7):

KATHI WOLFE: President should sign bill outlawing genetic discrimination

On May 1, Congress did something admirable. It passed the first civil rights law of the 21st century: the Genetic Information Nondiscrimination Act.

The bill, which President Bush is expected to sign soon, will prohibit employers and insurance companies from engaging in discrimination based on genetic testing.

As someone who is legally blind and encounters disability-related bias, I applaud this legislation.

According to the U.S. Census Bureau there are 54 million Americans with disabilities. Many of us are denied jobs or health insurance because of our disabilities.

Until fairly recently, most able-bodied people have not worried that they, too, might run up against such bias. But with the mapping of the human genome...

...Read more.

92% Termination Rate of Fetuses with Down Syndrome Leads to Dwindling Populations

From the Roswell Beacon (Georgia) - April 21:

An excerpt follows from the article entitled
"Modern Eugenics: The Elimination of a People" by Alan Sverdlik:

Overcoming The Odds
Scanning the faces bunched together in a converted Sunday school classroom – innocent, mischievous, curious, mirthful – it is startling to consider that most of them overcame daunting odds just to be born, let alone accept a genetic defect with such evident grace. In fact, the number of people with Down syndrome, which can cause mild to moderate mental retardation, are dwindling so rapidly that respected advocacy groups consider them an endangered species whose survivors face a bleak future: lonely, unwelcome, ignored by medical researchers, shunned by insurance companies...

...Read the entire article.

"Building Baby from the Genes Up"

Ronald M. Green, professor of Ethics at Dartmouth College, authored an opinions column for The Washington Post over the weekend entitled "Building Baby from the Genes Up" (April 13). While acknowledging the concerns of those leery of eugenic "slippery slopes," Green hails the possibilities of diminishing illness and disabilities via genetic technologies.

From "Building Baby from the Genes Up," by Ronald M. Green:

"Since the completion of the Human Genome Project in 2003, our understanding of the genetic bases of human disease and non-disease traits has been growing almost exponentially. The National Institutes of Health has initiated a quest for the "$1,000 genome," a 10-year program to develop machines that could identify all the genetic letters in anyone's genome at low cost (it took more than $3 billion to sequence the first human genome). With this technology, which some believe may be just four or five years away, we could not only scan an individual's -- or embryo's -- genome, we could also rapidly compare thousands of people and pinpoint those DNA sequences or combinations that underlie the variations that contribute to our biological differences.

With knowledge comes power. If we understand the genetic causes of obesity, for example, we can intervene by means of embryo selection to produce a child with a reduced genetic likelihood of getting fat. Eventually, without discarding embryos at all, we could use gene-targeting techniques to tweak fetal DNA sequences. No child would have to face a lifetime of dieting or experience the health and cosmetic problems associated with obesity. The same is true for cognitive problems..."

...Read more.

Home Bipolar Genetic Test Causes Controversy

From The Examiner (March 24):

Home Bipolar Disorder Test Causes Stirs

By MARCUS WOHLSEN

March 24, 2008

SAN DIEGO

Dr. John Kelsoe has spent his career trying to identify the biological roots of bipolar disorder. In December, he announced he had discovered several gene mutations closely tied to the disease, also known as manic depression.

Then Kelsoe, a prominent psychiatric geneticist at the University of California, San Diego, did something provocative for the buttoned-down world of academic medical research: He began selling bipolar genetic tests straight to the public over the Internet last month for $399.

His company, La Jolla-based Psynomics, joins a legion of startups racing to exploit the boom in research connecting genetic variations to a host of health conditions. More than 1,000 at-home gene tests have burst onto the market in the past few years...

The proliferation of these tests troubles many public health officials, medical ethicists and doctors. The tests receive almost no government oversight, even though many of them are being sold as tools for making serious medical decisions...

...Read more.

UK Bill Would Ban Selection of "Deaf Embryos"

From TheObserver (UK newspaper, Guardian Unlimited):

This Couple Want a Deaf Child.
Should we try to stop them?

March 9, 2008

By Gaby Hinsliff and Robin McKie

Like any other three-year-old child, Molly has brought joy to her parents. Bright-eyed and cheerful, Molly is also deaf - and that is an issue which vexes her parents, though not for the obvious reasons. Paula Garfield, a theatre director, and her partner, Tomato Lichy, an artist and designer, are also deaf and had hoped to have a child who could not hear.

'We celebrated when we found out about Molly's deafness,' says Lichy. 'Being deaf is not about being disabled, or medically incomplete - it's about being part of a linguistic minority. We're proud, not of the medical aspect of deafness, but of the language we use and the community we live in.'

Now the couple are hoping to have a second child, one they also wish to be deaf - and that desire has brought them into a sharp confrontation with Parliament...

...Read the rest of the article.

Senate Committee Passes Prenatal / Postnatal Conditions Awareness Bill

FOR IMMEDIATE RELEASE
NEWS RELEASE
Contact Brian Hart/Becky Ogilvie

February 27, 2008

BROWNBACK APPLAUDS COMMITTEE PASSAGE OF PRE-NATALLY AND POST-NATALLY DIAGNOSED CONDITIONS AWARENESS ACT

Urges full Senate consideration for bill to help parents of disabled children

WASHINGTON – U.S. Senator Sam Brownback today applauded Senate Health, Education, Labor and Pensions Committee passage of the Pre-natally and Post-natally Diagnosed Conditions Awareness Act, legislation which would require that families who receive a diagnosis of Down syndrome or any other condition, pre-natally or up until a year after birth, will be given pertinent information about the condition and connection with support services and networks that could offer assistance. 

“It is difficult, sometimes overwhelming, for expecting parents to receive news that their unborn child may be born with a disability,” said Brownback.  “This legislation will help parents receiving such news by supplying them with current and reliable information about the many options available for caring for children with disabilities.” 

The Pre-natally and Post-natally Diagnosed Conditions Awareness Act, sponsored by Senators Brownback and Edward Kennedy (D-MA), today by unanimous consent was passed by the Senate HELP Committee.  The bill now moves to full Senate consideration.   

Brownback continued, “I am hopeful this bill soon moves to consideration by the full Senate.  The quicker my colleagues and I move to pass this bill, the more quickly we can help families across the nation.” 

The Pre-natally and Post-natally Diagnosed Conditions Awareness Act would provide for the expansion and further development of a national clearinghouse on information for parents of children with disabilities to assist parents whose children have recently been pre- or post-natally diagnosed. The bill also provides for the expansion and further development of national and local peer-support programs.  The bill also calls for the creation of a national registry of families willing to adopt children with pre- or post-natally diagnosed conditions.

Currently, 90 percent of children pre-natally diagnosed with Down syndrome are aborted.  That percentage is similar for children pre-natally diagnosed with other conditions such as spina bifida, cystic fibrosis, and dwarfism.

Biology Professor: "Moral Thing to Do" is Abort Down Syndrome Fetuses

From The Associated Press (February 16):

Professor's comments on Down's syndrome anger some students
A University of North Carolina professor has angered some of his students after saying he thinks fetuses with Down syndrome should be aborted.

Albert Harris, 65, made the comment in his embryology class. He has taught in Chapel Hill for 35 years.

"In my opinion," Harris wrote in his lecture notes, "the moral thing for older mothers to do is to have amniocentesis, as soon during pregnancy as is safe for the fetus, test whether placental cells have a third chromosome #21, and abort the fetus if it does. The brain is the last organ to become functional."...

...Read more.

"If the Test Says Down Syndrome"

From The Washington Post (11/16):

If the Test Says Down Syndrome
by Patricia Bauer

All across the land this fall, people have been gathering to promote awareness and acceptance of Down syndrome. Central to their message is the idea that people with the condition are valued family members who lead happy, fulfilling lives.

At the National Institutes of Health and the Centers for Disease Control and Prevention, scientists have been meeting to develop research agendas to improve the lives of people with Down syndrome, the genetic condition that results when a person has three copies of the 21st chromosome instead of the usual pair.

But in the places where medicine is practiced, a very different and less benevolent awareness of Down syndrome reigns...

... Read the entire column.