Calif. Hospitals Say DNA Storage Bill Would Create ‘Duplicative’ Work
The California Hospital Association is opposing a bill (AB 170) that would change the consent rules of the state's infant DNA screening program, Government Technology reports (Heaton, Government Technology, 5/19).
Background on DNA Program
For the last 30 years, nearly every infant born in California has had their blood taken to screen for 80 medical conditions, such as sickle cell anemia and cystic fibrosis.
The samples are kept in a biobank indefinitely. California is one of 20 states that maintain control of the samples after they have been screened.
The samples also can be sold to genetic researchers. California is one of just four states that charge a fee for the samples.
The samples are de-identified and assigned a number that can be used to find identifying information from another source. However, names are not given to researchers.
Still, advocates have raised concerns about privacy and use of the DNA samples of about 16 million California residents being stored in a San Francisco Bay Area warehouse.
Details of AB 170
AB 170, by Assembly member Mike Gatto (D-Glendale), would allow blood donors to have their samples destroyed at age 18.
Gatto amended the bill to require the state to receive written consent from parents before the samples are stored and sold for research (California Healthline, 2/5). According to Government Technology, the consent form includes information on the retention and use of the DNA samples (Government Technology, 5/19).
Parents already can opt out, but Gatto has said that many people are unaware of that option (California Healthline, 2/5).
The bill would require the California Department of Public Health to comply with any parent's request to:
- Destroy existing samples; and
- Not use their child's DNA samples for medical research.
After Gatto amended the bill's consent provisions, CHA raised concerns about the additional clerical work hospitals would be required to complete, Government Technology reports.
Lois Richardson, vice president of privacy and legal publications and education at CHA, said that the bill would create duplicative work for hospitals because parents already receive information about the DNA program in two brochures.
Richardson said, "That administrative burden would fall on the hospital to get the mom's signature, scan it and put it in an electronic medical record," adding, "We think it is duplicative and completely unnecessary" (Government Technology, 5/19).This is part of the California Healthline Daily Edition, a summary of health policy coverage from major news organizations. Sign up for an email subscription.