MN Health Department Yanks Baby DNA Rule to Avoid Judge’s Parent Consent Requirements

Minneapolis/Saint Paul The Minnesota Department of Health has suddenly and quietly withdrawn the newborn genetic screening rule which was set to be rolled out at the end of this month, says Citizens’ Council on Health Care (CCHC). “Clearly, the Minnesota Department of Health is not interested in protecting the genetic privacy and property rights of its newest citizens and their families. Instead they hope to use the legislative process to maintain their illegal ownership of baby DNA,” says Twila Brase, president of CCHC.

After CCHC forced the Department to hold a public hearing on the proposed newborn genetic screening rule on January 23, 2007, administrative law judge Barbara Neilsen ruled that portions of the proposed rule had “defects” and required specific changes, including:

  • Against the Department’s written wishes, Judge Neilsen required that parents of newborns be given a Tennessen Warning as requested by CCHC at the public hearing. The Warning, which is required for most data collection by government agencies, would fully inform parents of state government’s involvement in the testing program, the parent’s right to refuse government collection of DNA and genetic data, and how the data would be used and who could access the data if the parents permitted their baby to be tested for a list of genetic conditions.
  • The judge also required explicit opt-in parent consent for the retention of newborn blood and DNA, and for dissemination of blood and genetic information to genetic researchers. Countering the Department’s executive decision ten years ago to begin retaining and disseminating newborn blood without parent knowledge or consent, Judge Neilsen specifically stated that Minnesota law does not authorize such retention and dissemination, and in fact such activities now specifically violate the 2006 Minnesota genetic privacy law.

In July, Commissioner Dianne Mandernach appealed the ruling to the Chief Administrative Law Judge, Raymond R. Krause. The appeal was denied.

According to a Department letter tucked away on the health department’s website—no press release was issued—the Commissioner is now withdrawing the rule to “seek legislative guidance on storage and use of blood spots.”

Ms. Brase provides the following statements:

“The health department has cleverly avoided getting specific consent from parents of newborn babies. They’ve avoided fully informing parents about what’s happening to their children. They’ve withdrawn the rule in hopes of using the political process to sanction 10 years of illegal blood retention and genetic research, and specifically to get approval for state government ownership of the DNA of newborn citizens.

“The department’s decision strips the judge’s genetic privacy and DNA property protections from newborn babies and their families. The Department is clearly disregarding the privacy and property rights of citizens in hopes of eventually dismissing them through the legislative process.

“Obviously these DNA samples have great value, but they belong to parents and their children, and not the State of Minnesota,” Brase adds.

“We again call on the Governor to make the Department follow the rule of law.

“We call on the Governor to protect the genetic privacy and property rights of parents and children by dissembling the health department’s warehouse of DNA wrongly taken from children and their parents, and by requiring the Department to get explicit fully informed consent from parents for newborn genetic testing.

“Minnesota’s children and parents are waiting for the Governor to protect their legal rights.”

Key Documents:

MDH Letter to Judge Krause, August 29, 2007

CCHC’s Letter to Governor Pawlenty, July 24, 2007

CCHC’s Letter to Commissioner Dianne Mandernach, July 12, 2007

Chief ALJ Raymond R. Krause’s Reconsideration Order, July 3, 2007

MDH Request for Reconsideration, June 27, 2007

The ALJ Report (ALJ Barbara Neilsen), March 27, 2007

CCHC Testimony/Submitted Comments to ALJ, January 23/31, 2007:

CCHC Attachments to Testimony, January 31, 2007

Office of Administrative Hearing Newborn Screening Rule including all letters from the public

Privacy is true price of healthy worker discounts

The latest fad in American health care is to give discounts to workers who are healthy. Many corporate CEOs and their benefits department managers are showing enthusiasm for the idea that workers who don’t take care of themselves ought to pay more for health insurance.

Like a lot of temptations, this one is attractive. Why should you pay the same rate for insurance as that bloated, pasty oaf of a co-worker down the hall?

But cupcakes, beer and cheeseburgers are not the only temptations you should try to resist. Paying less for being healthy is an enticement you ought to oppose as well.

The plan just announced by the giant HMO UnitedHealthcare is a good example of why some bosses are licking their chops at the fad. Workers can lower their annual deductible (the amount you pay each year for health care or drugs before insurance kicks in) if they take company-administered tests every year to check blood pressure, cholesterol levels, and weight and to see if they smoke. For each health goal employees meet, $500 is knocked off their deductible.

This bright idea comes all dressed up in the attractive language of personal responsibility. Who could possibly be against that? If your boss wants to pay you to stop unhealthy behavior, how could that be bad? You win, the boss wins, the insurance company wins. So what’s the problem?

{The idea that your boss or insurance company wants you healthy just because they care is, upon serious reflection, dumb. What your boss cares about is that you get to work, work hard, stay late and don’t jack up the price of the health plan. And the insurers may just be looking for a way to shift exploding health care costs.

If you ski, fly a private airplane, drive go-karts, ride a motorcycle without a helmet, engage in risky sexual behavior, forgo a flu shot, sunbathe, eat rare meat, kayak, scuba dive or own a gun, you are defying medical wisdom and choosing to engage in unhealthy behavior. ~ Arthur Caplan, as quoted in the article}

Genetic conflict

Advocates, legislators gear up for battle in the fight to keep genetic information, testing secure from employers, insurers.
Carolina Hinestrosa was 35 when she beat breast cancer. She was 40 when she beat it a second time. Her younger sister also battled breast cancer twice, and over the past few years, two of her cousins and an aunt were diagnosed with the disease.
Of course, Hinestrosa, an executive vice president with the National Breast Cancer Coalition, strongly suspects that a genetic mutation for breast cancer runs in her family. Knowing for sure could help her and her relatives take steps to possibly avoid or better manage the disease. But she said she has chosen not to seek confirmation through a genetic test for fear of the potential consequences it may have on her 15-year-old daughter.
Hinestrosa worries that if she tests positive for the “breast cancer gene,” her daughter might be obligated to disclose having a hereditary predisposition to the disease—personal information that could be misused to deny her health insurance or even employment in the future.

Facing Life With a Lethal Gene

The test, the counselor said, had come back positive. Katharine Moser inhaled sharply. She thought she was as ready as anyone could be to face her genetic destiny. She had attended a genetic counseling session and visited a psychiatrist, as required by the clinic. She had undergone the recommended neurological exam. And yet, she realized in that moment, she had never expected to hear those words.
Ms. Moser was 23. It had taken her months to convince the clinic at NewYork-Presbyterian Hospital/Columbia University Medical Center in Manhattan that she wanted, at such a young age, to find out whether she carried the gene for Huntington’s disease.
Huntington’s, the incurable brain disorder that possessed her grandfather’s body and ravaged his mind for three decades, typically strikes in middle age. But most young adults who know the disease runs in their family have avoided the DNA test that can tell whether they will get it, preferring the torture — and hope — of not knowing.
Ms. Moser is part of a vanguard of people at risk for Huntington’s who are choosing to learn early what their future holds. Facing their genetic heritage, they say, will help them decide how to live their lives.
Yet even as a raft of new DNA tests are revealing predispositions to all kinds of conditions, including breast cancer, depression and dementia, little is known about what it is like to live with such knowledge.
{Many people are unwilling to take genetic tests, knowing that afterwards they might not be able to get a job or health insurance. The woman in this story was warned about these consequences but still chose to be tested for Huntington’s Chorea. First, Congress should require informed consent before genetic test results are disclosed to physicians who are actually treating the affected individuals. Second, genetic test results should never be disclosed to insurers, employers, or the other 600,000 health-related businesses and government agencies that are currently granted access to Americans’ complete personal health information by HIPAA, even with consent. Genetic records in particular should never be disclosed to anyone other than physicians, because the results can be used to discriminate against the children, families, and other relatives of those who take genetic tests. No one should be able to give consent to disclose or use genetic or other sensitive personal health information that can harm someone else’s life or opportunities in life. ~ Dr. Deborah Peel, Patient Privacy Rights}

Act Now to Prevent Genetic Discrimination

Cheers to IBM for its recent pledge to not use genetic information in its hiring practices or in deciding eligibility for health insurance coverage for its 300,000 employees. Yet the fact that IBM felt the need to take such action highlights the gap in federal legislation to adequately protect job candidates and employees from discrimination based on their personal genetic information. And will it be a bellwether for action on a national level?

At least 20 bills have been introduced in Congress to prohibit genetic discrimination in the past 10 years. Only one has passed, providing limited protection against genetic discrimination for the group health insurance market. National legislation to prohibit genetic discrimination by employers and health insurers is way overdue.

A prime example of the abuse of genetic information is a much-publicized $2.2 million settlement between Burlington Northern Santa Fe Railway Co. and the U.S. Equal Employment Opportunity Commission. The railway tested or sought testing for 36 unsuspecting employees in an attempt to establish that injury claims were due to genetic disease and not to work-related activities. The science here was shaky, but the surreptitious misuse was clear-cut.

The recent case involving former Chicago Bulls basketball player Eddy Curry and the team’s request for DNA testing to diagnose a heart arrhythmia also highlights the interest in genetic information in making personnel decisions.

Testimony before a federal advisory committee on genetics, health and society last year revealed that citizens were avoiding or hiding test results because they might lose their health insurance. Do we want women with a family history of breast cancer deciding not to get tested out of fear of discrimination?

As more genetic tests are developed to help prevent disease or enable early detection, protections against the potential misuse of genetic information become ever more important. Employers may decide not to hire someone based on his or her genetic predisposition to diseases such as cancer or heart disease. Or an insurer may raise premiums or decline coverage for individuals with a high risk of disease or disability based on genetic differences. The enactment of national legislation to protect all individuals from genetic discrimination will not just benefit a select few who are affected with a genetic disease. All of us have genetic miscues in our genomes that may one day lead to disease. Given all of the bills introduced over the last 10 years, what is the hang-up in passing this legislation? Most politicians support the legislation, as evidenced by the Senate vote on the most recent bill — 98 to 0. And the president has indicated his willingness to sign such legislation. Ironically, groups that represent employers have voiced concerns that this bill addresses a problem that doesn’t exist and creates a new cause of action against employers. Therefore, the announcement by IBM comes both as a surprise and a welcome vote of confidence that businesses can survive without peering into the genomes of potential and current employees.

In the absence of national protections, most states have passed legislation to prohibit or limit the use of genetic information for risk selection and risk classification for health insurance or employment purposes. However, the scope of protections varies by state. The only other employer known to offer protection from genetic discrimination is the federal government; in 2000, an executive order was signed by President Clinton providing protection for 2.7 million federal employees. If the move by IBM instigates more employers to develop their own policies on the use of genetic information, this will result in a messy patchwork of company policies on top of inconsistent state laws.

Regardless of how widespread genetic discrimination practices are, the fear of discrimination could cripple important genetic-related technologies before they are introduced. Fear drives policy, as evidenced by the anxiety surrounding genetically modified organisms in Europe. Without national protections, individuals may decline to participate in genetic research studies or may compromise their health by refusing testing of their genomes, thereby halting the field and promise of genetics. This is why IBM’s action provides a model for Congress. Let’s not squander the promises of genetics by failing to protect our citizens from discrimination.

Susanne B. Haga is senior policy analyst for the Institute for Genome Sciences and Policy at Duke University. Huntington F. Willard is director of the institute.

Wal-Mart Memo Suggests Ways to Cut Employee Benefit Costs

An internal memo sent to Wal-Mart’s board of directors proposes numerous ways to hold down spending on health care and other benefits while seeking to minimize damage to the retailer’s reputation. Among the recommendations are hiring more part-time workers and discouraging unhealthy people from working at Wal-Mart.
In the memorandum, M. Susan Chambers, Wal-Mart’s executive vice president for benefits, also recommends reducing 401(k) contributions and wooing younger, and presumably healthier, workers by offering education benefits. The memo voices concern that workers with seven years’ seniority earn more than workers with one year’s seniority, but are no more productive.
To discourage unhealthy job applicants, Ms. Chambers suggests that Wal-Mart arrange for “all jobs to include some physical activity (e.g., all cashiers do some cart-gathering).”
The memo acknowledged that Wal-Mart, the world’s largest retailer, had to walk a fine line in restraining benefit costs because critics had attacked it for being stingy on wages and health coverage. Ms. Chambers acknowledged that 46 percent of the children of Wal-Mart’s 1.33 million United States employees were uninsured or on Medicaid.
Wal-Mart executives said the memo was part of an effort to rein in benefit costs, which to Wall Street’s dismay have soared by 15 percent a year on average since 2002. Like much of corporate America, Wal-Mart has been squeezed by soaring health costs. The proposed plan, if approved, would save the company more than $1 billion a year by 2011.
In an interview, Ms. Chambers said she was focusing not on cutting costs, but on serving employees better by giving them more choices on their benefits.
“We are investing in our benefits that will take even better care of our associates,” she said. “Our benefit plan is known today as being generous.”
Ms. Chambers also said that she made her recommendations after surveying employees about how they felt about the benefits plan. “This is not about cutting,” she said. “This is about redirecting savings to another part of their benefit plans.”
One proposal would reduce the amount of time, from two years to one, that part-time employees would have to wait before qualifying for health insurance. Another would put health clinics in stores, in part to reduce expensive employee visits to emergency rooms. Wal-Mart’s benefit costs jumped to $4.2 billion last year, from $2.8 billion three years earlier, causing concern within the company because benefits represented an increasing share of sales. Last year, Wal-Mart earned $10.5 billion on sales of $285 billion.
A draft memo to Wal-Mart’s board was obtained from Wal-Mart Watch, a nonprofit group, allied with labor unions, that asserts that Wal-Mart’s pay and benefits are too low. Tracy Sefl, a spokeswoman for Wal-Mart Watch, said someone mailed the document anonymously to her group last month. When asked about the memo, Wal-Mart officials made available the updated copy that actually went to the board.
Under fire because less than 45 percent of its workers receive company health insurance, Wal-Mart announced a new plan on Monday that seeks to increase participation by allowing some employees to pay just $11 a month in premiums. Some health experts praised the plan for making coverage more affordable, but others criticized it, noting that full-time Wal-Mart employees, who earn on average around $17,500 a year, could face out-of-pocket expenses of $2,500 a year or more.
Eager to burnish Wal-Mart’s image as it faces opposition in trying to expand into New York, Chicago and Los Angeles, Wal-Mart’s chief executive, H. Lee Scott Jr., also announced on Monday a sweeping plan to conserve energy. He also said that Wal-Mart supported raising the minimum wage to help Wal-Mart’s customers.
The theme throughout the memo was how to slow the increase in benefit costs without giving more ammunition to critics who contend that Wal-Mart’s wages and benefits are dragging down those of other American workers.
Ms. Chambers proposed that employees pay more for their spouses’ health insurance. She called for cutting 401(k) contributions to 3 percent of wages from 4 percent and cutting company-paid life insurance policies to $12,000 from the current level, equal to an employee’s annual earnings.
Life insurance, she said, was “a high-satisfaction, low-importance benefit, which suggests an opportunity to trim the offering without substantial impact on associate satisfaction.” Wal-Mart refers to its employees as associates.
Acknowledging that Wal-Mart has image problems, Ms. Chambers wrote: “Wal-Mart’s critics can easily exploit some aspects of our benefits offering to make their case; in other words, our critics are correct in some of their observations. Specifically, our coverage is expensive for low-income families, and Wal-Mart has a significant percentage of associates and their children on public assistance.”
Her memo stated that 5 percent of Wal-Mart’s workers were on Medicaid, compared with 4 percent for other national employers. She said that Wal-Mart spent $1.5 billion a year on health insurance, which amounts to $2,660 per insured worker.
The memo, prepared with the help of McKinsey & Company, said the board was to consider the recommendations in November. But the memo said that three top Wal-Mart officials – its chief financial officer, its top human relations executive and its executive vice president for legal and corporate affairs – had “received the recommendations enthusiastically.”
Ms. Chambers’s memo voiced concern that workers were staying with the company longer, pushing up wage costs, although she stopped short of calling for efforts to push out more senior workers.
She wrote that “the cost of an associate with seven years of tenure is almost 55 percent more than the cost of an associate with one year of tenure, yet there is no difference in his or her productivity. Moreover, because we pay an associate more in salary and benefits as his or her tenure increases, we are pricing that associate out of the labor market, increasing the likelihood that he or she will stay with Wal-Mart.”
The memo noted that Wal-Mart workers “are getting sicker than the national population, particularly in obesity-related diseases,” including diabetes and coronary artery disease. The memo said Wal-Mart workers tended to overuse emergency rooms and underuse prescriptions and doctor visits, perhaps from previous experience with Medicaid.
The memo noted, “The least healthy, least productive associates are more satisfied with their benefits than other segments and are interested in longer careers with Wal-Mart.”
The memo proposed incorporating physical activity in all jobs and promoting health savings accounts. Such accounts are financed with pretax dollars and allow workers to divert their contributions into retirement savings if they are not all spent on health care. Health experts say these accounts will be more attractive to younger, healthier workers.
“It will be far easier to attract and retain a healthier work force than it will be to change behavior in an existing one,” the memo said. “These moves would also dissuade unhealthy people from coming to work at Wal-Mart.”
Ron Pollack, executive director of Families U.S.A., a health care consumer-advocacy group, criticized the memo for recommending that more workers move into health plans with high deductibles.
“Their people are paying a very substantial portion of their earnings out of pocket for health care,” he said. “These plans will cause these workers and their families to defer or refrain from getting needed care.”
The memo noted that 38 percent of Wal-Mart workers spent more than one-sixth of their Wal-Mart income on health care last year.
By reducing the amount of time part-timers must work to qualify for health insurance, Wal-Mart is hoping to allay some of its critics.
One proposal under consideration would offer new employees “limited funding” so they could “gain access to the private insurance market” after 30 days of employment while waiting to join Wal-Mart’s plan.
Such assistance, the memo stated, “would give us a powerful set of messages to use in combating critics. (For instance, ‘Wal-Mart offers associates access to health insurance after they’ve worked with us for just 30 days.’)”
Steven Greenhouse reported from New York for this article, and Michael Barbaro from Bentonville, Ark.

IBM: No-go for genetic screening

IBM, the world’s largest computer maker, pledged Monday not to use genetic data to screen employees and applicants in what it said was the first such move by a major corporation to safeguard a new category of privacy.

International Business Machines Corp. (Research) also said it would refrain from using the data in determining eligibility for health care or benefits plans.

The pledge comes as Congress debates a proposed privacy bill that would bar health insurers and employers from discriminating against people with a genetic predisposition to disease.

Four years ago, railroad conglomerate 3Burlington Northern Santa Fe Corp. (Research) agreed to abstain from submitting its employees to genetic testing after it was sued by federal regulators.

“Genetic information comes pretty close to the essence of who you are, it’s something you can’t change,” IBM’s chief privacy officer, Harriet Pearson, told Reuters.

“It has nothing to do with your employment, how good your contributions are, how good of a team member you are, so making a policy statement in this case is the right thing to do,” she said.

IBM, based in Armonk, N.Y., employs more than 300,000 people worldwide.

The Genetic Alliance, a Washington-based patients advocacy group, called IBM’s policy “remarkable” and predicted it would spur other U.S. corporations to follow suit.

IBM shares rose 75 cents, or nearly 1 percent, to $81.25 trading Monday after Citigroup upgraded its rating on the company to “buy” from “hold.” IBM’s share price has dropped more than 17 percent this year.