California Genetic Information Privacy Act, Effects on Research
The proposed Genetic Information Privacy Act if passed could have negative effect on research, according to Nature.
“It’s becoming easier and quicker and cheaper for people to obtain their genetic profile or genetic information. It’s such sensitive and personal information that it ought to be protected,” says, California state Senator Alex Padilla and the bill’s author.
DNA has a map of not only the past and present of person but also of his or her future. A lot of information can be decoded from a genetic record a person. Some call it the “future diary”. Advocates of genetic privacy laws want DNA to be regarded as “personal property” and that anybody trespassing this property can be persecuted.
Researchers feel that this move may halt genetic research in the state or make it really expensive to carry out.
“It’s just an incredible proposition that the money and effort that would be spent to obtain those large datasets would be just thrown away. California would be shut out of doing that kind of genetic research,” said David Segal, associate director of genomics at the University of California.
He says that destroying a database that takes years to build and then recollecting fresh consents for further research is unfeasible.
Genetic and Public Policy had earlier reported that genetic research participants increasingly want to know about their genetic information and this trend is causing concern among scientists. The major issue is that people might take these genetic test results on the face value and harm them emotionally.
“If researchers are worried about not being able to do research with inadequate consent, then maybe they should be worried. “Nothing in this bill prevents anybody from doing research, it simply adds a level of consent,” says Jeremy Gruber, president, Council for Responsible Genetics based in Cambridge, Massachusetts.
According to reports, recently Minnesota Department of Health was sued for collecting blood samples of the infants without the knowledge of parents and then conducting genetic analysis of samples and passing information to the researchers.
The agency was asked to destroy all samples and the genetic information database.
“My intent is not to impede research; my intent is to protect consumers,” says Padilla.
Last year the Governor signed Senate Bill 559 (Padilla), a law that protects citizens from being discriminated on the basis of genetic testing. The citizens cannot be refused insurance cover, housing, education or employment based on genetic testing.
“If we think of the lengths we go to protect financial information or credit card numbers, it seems to me that your genetic information is both much more personal and much more valuable than anything else that we currently protect, I think society as a whole could benefit if this bill is passed and signed into law,” Padilla says.
Penalties for violating the California bill would range from $1,000 to $10,000, Nature reports.