Project seeking genetic info sets up shop in Minneapolis skyway, offers $100 a sample
"This was a great place to get a cross section of people," said
Such mass collection of genetic information for research has come a long way since the mapping of the human genome in 2003.
The
The genealogy company
"It is important to democratize personal genetics and make it more accessible,"
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
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
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
"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
Life Epigenetics is owned by
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
It's probably worth more than
"I needed the money," she said.
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