Project seeking genetic info sets up shop in Minneapolis skyway, offers $100 a sample

Oct. 12--Skyway pedestrians in Minneapolis can earn $100 for samples of their blood, urine and saliva in the latest type of genetic research, this time to help develop life insurance products.

Scientific Testing Partners, which set up in the second floor of the U.S. Bank building at the start of October, is seeking 1,000 participants in a project that illustrates the rapid expanse in genetic know-how and in its collection of data for business, public health, genealogy and academic research.

"This was a great place to get a cross section of people," said Dan Callahan, a spokesman for Scientific Testing, as lunchtime walkers cruised past Wednesday.

Such mass collection of genetic information for research has come a long way since the mapping of the human genome in 2003.

The Mayo Clinic is participating in the federal All Of Us project to collect genetic data and biospecimens from 1 million people to identify how genes, lifestyle choices and environment affect health. The University of Minnesota has collected saliva and lifestyle data from visitors at the State Fair to study influences on child development.

The genealogy company 23andMe has frequently provided anonymous genetic data to researchers and pharmaceutical companies and conducted its own studies. In 2015, it published a report in an academic journal on the genetic origins of motion sickness.

"It is important to democratize personal genetics and make it more accessible," 23andMe co-founder Anne Wojcicki said in a recent news release.

Now, this type of data collection is being adopted by the insurance industry, but in a way that prompted a buyer beware warning from the Minnesota Department of Commerce, because it provides no legal oversight over how that genetic data can be used.

Callahan said the data collected by Scientific Testing will determine what types of specimens (blood, saliva, urine, etc.) can produce the biomarkers that are needed to predict customers' life spans and insurance needs.

Life insurance companies already make underwriting decisions and set premiums based on lifestyle practices, such as smoking, and on analyses of blood samples for diseases or infections.

Callahan said the research will be focused on epigenetics -- or how genetic expression can be affected by smoking, exercise, diet and other habits. The industry draws a "line in the sand" on evaluating people on genes alone, he said, because it is "problematic" to judge people on inherited traits over which they have no control.

The federal Genetic Information Nondiscrimination Act of 2008 bans the use of genetic information for employment and health insurance decisions. The law followed a high-profile federal lawsuit over the BNSF Railway's collection of genetic data from workers who filed carpal tunnel claims.

The law does not apply to life insurance and related products, though, and the state has no oversight over this form of genetic testing, said Julia Miller of the state commerce department, which regulates insurers.

"Consumers who are considering providing personal health data to organizations who collect this data for life insurance companies [are urged] to read the fine print," she said, "and understand what their personal health data will be used for before providing it."

Callahan said Scientific Testing is amassing epigenetic data for one company, but declined to name it for now to preserve the independence of the collection process.

Public records, however, offer hints of which companies may be involved. Scientific Testing is owned by Life Epigenetics, according to corporate filings with the Minnesota secretary of state. It's a Minneapolis company that is using proprietary "life-span predictive technology" to create life insurance products.

Life Epigenetics is owned by GWG Holdings, which is traded on the NASDAQ exchange and operates a variety of businesses, including one that buys out life insurance policies for people who need money to finance long-term care or other needs.

While Scientific Testing can identify participants to prevent them from conducting the testing twice and doubling their money, Callahan said their genetic information is masked and stored in a secured database. The anonymous information is used only by in-house researchers and is not sold to others, he said.

Participants have 30 days to back out, and at any time can request to withdraw their consent and have their data removed from the company's archives, he added. "We don't want anyone to participate who has any qualms."

Despite the precautions, the approach raised concerns for Mayo bioethicist Megan Allyse. Most collection of genetic data involves an academic partner, which is beholden to federal guidelines and institutional review boards, she said. Study results are then peer-reviewed.

Companies don't live under such standards, although their researchers must comply with ethical requirements of their professional licenses.

"Ethically, is it a good idea?" she said of the private collection. "I don't think so."

Mayo attorney Sharon Zehe said the public got a wake-up call to the secondary use of genetic data when it was used in San Francisco to arrest the "Golden State Killer." People need to understand the terms of any consent agreements they sign, she said, and any opt-out options against secondary use of their data by police or others.

Abagail Conley, 53, understood the value of the information she was giving to Scientific Testing when she agreed to provide her medical history and biospecimens this week.

It's probably worth more than $100, she said, but "funds are a little tight."

Rosemary Penafiel, 64, was mindful of her father, who died of a heart attack, and her mother, who died from Alzheimer's disease. She hoped her genetic data could somehow help improve health care, but her ultimate motive was simpler.

"I needed the money," she said.

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