Want A Job In Akron? Hand Over Your DNA

It’s not unusual for employers to conduct criminal background checks during the hiring process. But the University of Akron has taken this to a surprising new level. The Ohio school now reserves the right to require any prospective faculty, staff, or contractor to submit a DNA sample, which genetic-testing experts say makes it the first employer in the nation to take such an extreme and potentially intrusive step.

The new policy, which says a “DNA sample for purpose of a federal criminal background check” may be collected, took the campus by surprise after it was announced last week. An adjunct faculty member has resigned in protest and is contemplating a lawsuit, and the local chapter of the American Association of University Professors says that genetic testing violates a collective bargaining agreement.

“At any number of levels, it’s alarming,” says Stephen Aby, a professor of bibliography who is the past president of Akron’s AAUP chapter. “It’s awfully broad. It gives them the discretion to do fingerprinting or DNA testing as they see fit.”

Adopting the policy, which the university’s board of trustees did in time for the fall semester, appears to violate a federal law that takes effect on November 21 called the Genetic Information Nondiscrimination Act, better known as GINA. It also could conflict with the Americans with Disabilities Act.

Genetic Privacy Debate hits Major League Baseball

The story highlights the use of DNA testing by ‘employers’–Major League Baseball franchises. Baseball tests to verify the ages and identities of players from Latin America, but the test samples can also be used to detect familial genetic dieseases such as ALS (which Lou Gehrig had).

• “DNA contains a host of information about risks for future diseases that prospective employers might be interested in discovering and considering,” said Kathy Hudson, the director of the Genetics and Public Policy Center and an associate professor at Johns Hopkins University. “The point of GINA was to remove the temptation and prohibit employers from asking or receiving genetic information.”

The big problem is that the Genetic Information Non-Discrimination Act (GINA) does not stop employers or insurers from receiving or using genetic information. It isn’t enforceable.

Baseball players are not the only ones whose DNA and genetic tests can be used against them–the same thing can happen to all of us.

According to GINA, employers and insurers can’t use genetic tests to discriminate against employees or enrollees in health plans, but there is no way to tell whether they do or not. Employers and insurers do not have to inform us if they have copies of our genetic or DNA records.

• Do you think an employer is going to tell you were passed over for a promotion based on your DNA?

GINA is toothless–it forbids bad behavior but there is no way to enforce it.

And Americans’ genetic privacy is not protected by HIPAA. HIPAA makes it impossible for any of us to prevent OUR sensitive health information from being used by millions of ‘covered entities’ and ‘business associates’ for purposes we would never agree with–including using genetic tests to discriminate againts us.

Face Book users control who sees the personal information they post on their walls, but Americans can’t control who sees their electronic health information. What’s wrong with this picture?

The rules for spending $19 Billion on health IT are being written now. Now is the time we must press to restore control over OUR personal health data.

Stay tuned–sign up for our alerts and we’ll tell you what you can do to save privacy.

Baseball’s Use of DNA Raises Questions

Confronted with cases of identity and age falsification by Latin American baseball prospects, Major League Baseball is conducting genetic testing on some promising young players and their parents.

Many experts in genetics consider such testing a violation of personal privacy. Federal legislation, signed into law last year and scheduled to take effect Nov. 21, prohibits companies based in the United States from asking an employee, a potential employee or a family member of an employee for a sample of their DNA.

Dozens of Latin American prospects in recent years have been caught purporting to be younger than they actually were as a way to make themselves more enticing to major league teams. Last week the Yankees voided the signing of an amateur from the Dominican Republic after a DNA test conducted by Major League Baseball’s department of investigations showed that the player had misrepresented his identity.

Some players have also had bone scans to be used in determining age range.

In a written statement, Major League Baseball said that it used DNA testing in the Dominican Republic “in very rare instances and only on a consensual basis to deal with the identity fraud problem that the league faces in that country.” The statement added that the results of the tests were not used for any other purpose.

Response to: Will Technology Cure Health Care — Or Kill It?

Giving your genome to a for-profit corporation for testing today is a very dangerous act for the following reasons:

1) Americans NO longer have the right to health privacy! Today, your rights to health privacy in electronic health systems are nil. You have no control over personal electronic health information. Federal bureaucrats eliminated our rights to control the use and disclosures of personal health information in electronic systems in 2002. The media has not reported on this drastic elimination of every Americans’ privacy rights. See HIPAA’s Intent v. Reality.

2) Once you reveal your genome, you will never be able to delete it from the private corporation’s data bases or make it private again. Why on earth would you pay someone to take and use the most personal health data that exists about you and your family for whatever purposes they choose? Think about Paris Hilton’s sex video, once it was out in cyberspace, it can never be private again. It will live for millenia on the Internet.

3) Why pay a private corporation like 23andMe or any other for-profit genetic testing lab to take your extremely valuable and sensitive personal health data and give it to them as a CORPORATE asset—to sell, to disclose to researchers for studies you might not want to be part of, to sell as an asset to employers or insurers or financial institutions, or even to sell to the US Government as part of the data profiles they are building on every American in Fusion Centers.

4) The legal duties of coporations are to stockholders, not to patients or people who buy genetic tests. Genetic testing labs like 23andMe can be bought by Google or the Bank of America or to a business that sells employers genetic snapshots of future employees’ potential illnesses. Even if you trust a genetic lab—-you have no control over whether that corporation is sold to another corporation that you would never want to own your DNA.

5) Today’s health IT systems are notoriously insecure and hackable. An industry study of 850 electronic health records systems found ALL of them could easily be hacked. See Article.

What assurances do you have that the lab’s database is secure enough to prevent your genome or genetic tests from being stolen?

6) It is crtical to understand that giving ownerhsip of a personal asset like your DNA or genome to a corporation is a very bad idea. Not only do you put your future opportunities at risk, you endanger your entire family’s futures at the same time.

As a practicing physician who has spent over 30 years listening to patients whose sensitve medical records were used against them by employers or used to humiliate them or harm them in public, I am very well aware of how personal health information is used to harm people and ruin lives. I founded Patient Privacy Rights because health information should never be used except to help you get well or for research WITH your informed consent. No one should be denied a job or a promotion because of fears about their future health.

Because of the lack of privacy, 600,000 people refuse to seek treatment or early diagnosis for cancer and 2,000,000 refuse treatment for mental illness. 150,000 Iraqi vets refuse treatment for PTSD because they fear their treatment will not be private. The result is the highest rate of suicide among active duty military in 30 years. The lack of health privacy kills.

Current law is just not enough to protect health privacy. GINA is not enough. We need Congress to restore our longstanding Constitutional, legal, and ethical rights to control personal health information. Without that right firmly re-established in Federal law, giving ANYONE your sensitive genomic or health information is a very bad idea.

Check out our website. You can sign up for e-alerts about health privacy in the Digital Age. If we are able to restore control over our personal digital health information, then we have a powerful model for building personal control over ALL our personal electronic data (financial, email, phone records, purchases, etc). If you do not fight for your privacy rights, who will?

If EVERYTHING about you is for sale and can be seen by everyone, will you continue to have your precious liberties and freedoms?

See Original Article

Resolving Individuals Contributing Trace Amounts of DNA to Highly Complex Mixtures Using High-Density SNP Genotyping Microarrays

Abstract:
“We use high-density single nucleotide polymorphism (SNP) genotyping microarrays to demonstrate the ability to accurately and robustly determine whether individuals are in a complex genomic DNA mixture. We first develop a theoretical framework for detecting an individual’s presence within a mixture, then show, through simulations, the limits associated with our method, and finally demonstrate experimentally the identification of the presence of genomic DNA of specific individuals within a series of highly complex genomic mixtures, including mixtures where an individual contributes less than 0.1% of the total genomic DNA. These findings shift the perceived utility of SNPs for identifying individual trace contributors within a forensics mixture, and suggest future research efforts into assessing the viability of previously sub-optimal DNA sources due to sample contamination. These findings also suggest that composite statistics across cohorts, such as allele frequency or genotype counts, do not mask identity within genome-wide association studies. The implications of these findings are discussed.”

Privacy concerns halt DNA database

The National Institutes of Health quietly blocked public access to databases of patient DNA profiles after learning of a study that found the genetic information may not be as anonymous as previously believed, the Los Angeles Times has learned.
NIH officials took the unusual step on Monday and removed two databases on their public Web site. The databases contained the genetic information of more than 60,000 cooperating patients. Scientists began posting the information publicly eight months ago for the purpose of furthering medical research.
Creators of the database had taken steps to mask the identities of individual patients, summarizing and aggregating the genetic information. However, the independent study released today reported that a new type of DNA analysis could confirm the identity of an individual in a pool of similarly masked data if that person’s genetic profile was already known.
Such a confirmation could reveal the patient’s participation in a study about a specific medical condition, experts said, and deny the patient their presumed confidentiality.

What You Should Know Before You Spit Into That Test Tube

Jeffrey Gulcher had no reason to think much about prostate cancer. He was just 48, and the disease typically strikes later in life. Even the most cautious medical groups agree that most men need not begin annual prostate screenings until age 50.
But Gulcher happens to be the chief scientific officer of deCODE Genetics — one of several companies that, amid some controversy, have begun offering direct-to-consumer DNA tests that can help people predict which diseases they are likely to get. So in April, he spat into a test tube and, without giving the matter much thought, sent the sample in for analysis by his own company.

Senate bill won’t prevent genetic discrimination, privacy activist says

A genetic nondiscrimination bill approved Thursday by a Senate panel won’t protect people from potentially losing their jobs or health insurance if the information gets out electronically, a privacy activist said.

Deborah Peel, MD, founder of Patient Privacy Rights, said the Genetic Information Nondiscrimination Act (GINA), approved April 24 by the Senate Health, Education, Labor and Pensions Committee, will not protect people because it allows insurers and employers to hold genetic information, a right that should be solely in the hands of people.

“Essentially, the bill addresses what to do once the horses (our genetic and DNA test results) are out of the barn,” Peel said. “It forbids employers or insurers from using our genetic information to discriminate against us, but there is literally no way to stop them from doing that when they hold and possess that sensitive information.”

Google Wants to Index Your DNA, Too

The Web search giant’s investment in Navigenics is further proof it wants an early stake in direct-to-consumer genetic screening.

Your DNA falls into the realm of “the world’s information,” and it seems that Google (GOOG), as part of its corporate mission, is making a play to organize that, too. The Internet giant received heavy press in 2007 when it invested at least $4.4 million(BusinessWeek.com, 11/29/07) in a genetic screening company, 23andMe, that was started by Anne Wojcicki, the wife of Google co-founder Sergey Brin, and her business partner.

Google’s interest in DNA doesn’t end there. It is also putting money into a second Silicon Valley DNA-screening startup, Navigenics. The company is also backed by star venture capital firm Kleiner, Perkins, Caufield & Byers. For a spit of saliva and $2,500, your genetic test results are securely delivered to your computer screen with your genetic likelihood for 18 medical conditions, from Alzheimer’s to rheumatoid arthritis to several types of cancer. Navigenics aims to boost disease prevention by providing customers reports on their DNA that they can share with their doctors. The company addresses privacy concerns by encrypting customer identities, and screens only for conditions it deems to have scientifically sound genetic studies. The company also offers genetic counseling.

My Genome, Myself: Seeking Clues in DNA

The exploration of the human genome has long been relegated to elite scientists in research laboratories. But that is about to change. An infant industry is capitalizing on the plunging cost of genetic testing technology to offer any individual unprecedented — and unmediated — entree to their own DNA.
For as little as $1,000 and a saliva sample, customers will be able to learn what is known so far about how the billions of bits in their biological code shape who they are. Three companies have already announced plans to market such services, one yesterday.
Offered the chance to be among the early testers, I agreed, but not without reservations. What if I learned I was likely to die young? Or that I might have passed on a rogue gene to my daughter? And more pragmatically, what if an insurance company or an employer used such information against me in the future?
But three weeks later, I was already somewhat addicted to the daily communion with my genes. (Recurring note to self: was this addiction genetic?)
For example, my hands hurt the other day. So naturally, I checked my DNA.
Was this the first sign that I had inherited the arthritis that gnarled my paternal grandmother’s hard-working fingers? Logging onto my account at 23andMe, the start-up company that is now my genetic custodian, I typed my search into the “Genome Explorer” and hit return. I was, in essence, Googling my own DNA.
{Amy Harmon rightfully worries that insurers and employers will use her genetic data, but she gets her DNA tested anyway. It is irresponsible for the NY Times to put this story on the front page and not report on the fact that today Americans have NO control over access to their personal health information—including DNA testing.  HIPAA authorizes over 4 million health-related businesses and government agencies to snoop in our electronic health records and sell them without notice or consent. And Congress has yet to restore our long-standing rights to privacy and to control access to our health information. Just last week, Senators Kennedy, Enzi, Clinton, Hatch, and Obama tried to rush a bill through the Senate to build a national electronic health system where consumers have no control over personal health information. They say privacy can be added later. But re-designing technology to guarantee that consumers give informed consent before data is used is nearly impossible and prohibitively expensive.  Privacy simply has to be built into electronic health systems up front. It is foolish to get tested when there is literally no way to stop your genetic information from being used by insurers and employers. Why endanger your child’s future? Most Americans will not participate in a health system that allows their sensitive health information to be used against them. Navigenics, DeCODE Genetics, and 23andMe can all legally sell our genetic data. No laws or rights prevent corporate use of the most sensitive information on Earth: our DNA and genomes.~Dr. Deborah Peel, Patient Privacy Rights}