Many U.S. states lack laws to protect people from harmful use of their whole DNA transcripts, or genomes, and should work with the federal government to provide consistent protection, presidential advisers said.
About half of states don’t have legislation that would prevent someone from secretly analyzing another person’s genome with the saliva from a used coffee cup, said Amy Gutmann, who led the Presidential Commission for the Study of Bioethical Issues panel that released a report today.
Variations in the human genome can spell the difference between health and disease for individuals, and the cost of a complete analysis has dropped from more than $1 million to about $4,500 in less than eight years. As genome sequencing becomes cheaper and more routine, the stakes are rising to keep vital information about a person’s health private, Gutman said.
“To make full use of whole genome sequencing, which holds out enormous promise for human health and medicine, we’re going to have to figure out how to protect people’s privacy and avoid the harm that come from misuse of this data,” said Gutmann, who is also president of the Philadelphia-based University of Pennsylvania, in a telephone conference with reporters.
Existing federal laws, such as the Health Insurance Portability and Accountability Act, the Genetic Information Nondiscrimination Act, and the Common Rule that protects research subjects, offer some protections against unauthorized use of medical data, the panel said. Rewriting those rules might ensure that patients have some needed protections, said Anita Allen, a University of Pennsylvania law professor and a member of the commission.
Such a reform “might be a very useful thing to do,” and is likely to be taken up by Congress, Allen said.
As cost of sequencing falls, doctors may begin using whole genomes to assess patients’ risk of cancer, diabetes, heart disease, or other conditions, the report said. Scientists are clamoring for more genomes to add to data sets that can help clarify the impact of variations in the genome, it said.
Many hospitals and medical centers are asking patients whether some of their genetic data, if not their whole genomes, can be used for such research, the report said.
“Those who are willing to share some of the most intimate information about themselves for the sake of medical progress should be assured appropriate confidentiality,” Gutmann said in a statement released by the commission.
The genome is a code of chemical letters, called bases, which instruct cells in making proteins and building tissues. The genome copied out in each human cell contains about 6 billion such bases, an information set so huge that, once deciphered by sequencers, it’s often stored on networked, “cloud” databases. The privacy of these computer storehouses must also be assured, said Lisa Lee, the commission’s executive director, on the conference call.
“The most important piece is there be consistent privacy protections across states and the country,” she said.
To contact the reporter on this story: John Lauerman in Boston at firstname.lastname@example.org
To contact the editor responsible for this story: Lisa Wolfson at email@example.com