There has been an ongoing privacy and ethics debate over the unauthorized or undisclosed use of newborns’ blood samples for purposes other than the standard disease-screening, which includes about 30 conditions. Now, there’s a trial study, called BabySeq, from Brigham and Women’s Hospital that “uses genomic sequencing to screen for about 1,800 conditions, including some cancers,” CBS Miami reports.

The privacy questions are clear: What happens to the DNA data — who keeps it, in what form, for how long — and who has access to it? The participants in the study have chosen to participate with, presumably, complete knowledge of the answers to these questions. But consider if the screening of 1,800 conditions, rather than the current 30, became the legal standard. This is a significant amount of highly personal information and there are substantial privacy issues.

BabySeq co-director, Dr. Robert Green, has raised some of these issues. “We can’t predict what kind of discrimination is going to be occurring by the time your child grows up,” Green said. “We can’t predict whether there’s some sort of privacy breaches, this information gets out and is used against your child in some sort of future scenario. And we, most importantly, we can’t predict the information’s accurate.” Read more »

In 2008, President George W. Bush signed the Genetic Information Nondiscrimination Act (Pub. L. 110-233). GINA restricts the collection and use of genetic information in a number of ways. GINA prohibits health insurance providers and employers from requiring genetic testing. Under the federal law, genetic data cannot be used to determine insurance premiums, eligibility for insurance, or employment.

States have also passed laws to protect individuals’ genetic privacy. Shortly after the passage of GINA, Illinois passed what would become Public Act 095-0927 (pdf), “An Act concerning health,” which strengthened privacy protections already in place under the Illinois Genetic Information Privacy Act of 1998. And in 2011, California Gov. Jerry Brown (D) signed SB 559, the California Genetic Information Nondiscrimination Act (CalGINA) (pdf). Going beyond the federal GINA, CalGINA also prohibits genetic discrimination in housing, mortgage lending, employment, health insurance coverage, life insurance coverage, education, public accommodations, and elections.

These laws are meant to protect employees’ privacy from employer access and to shield them from discrimination based on their genetic data, but the federal GINA could be undermined if a bill being considered in Congress becomes law. Read more »

In a recent article for Science, researchers Yves-Alexandre de Montjoye, Laura Radaelli, Vivek Kumar Singh, and Alex “Sandy” Pentland showed that the “anonymization” of personal data is not a guarantee of privacy for individuals. Before we discuss their study, let’s consider that it has been almost two decades of researchers telling us that anonymization, or “de-identification,” of private information has significant problems, and individuals can be re-identified and have their privacy breached.

Latanya Sweeney has been researching the issue of de-anonymization or re-identification of data for years. (She has taught at Harvard and Carnegie Mellon and has been the chief technologist for the Federal Trade Commission.) In 1998, she explained how a former governor of Massachusetts had his full medical record re-identified by cross-referencing Census information with de-identified health data. Sweeney also found that, with birth date alone, 12 percent of a population of voters can be re-identified. With birth date and gender, that number increases to 29 percent, and with birth date and Zip code it increases to 69 percent. In 2000, Sweeney found that 87 percent of the U.S. population could be identified with birth date, gender and Zip code. She used 1990 Census data.

In 2008, University of Texas researchers Arvind Narayanan and Vitaly Shmatikov were able to reidentify (pdf) individuals from a dataset that Netflix had released, data that the video-rental and -streaming service had said was anonymized. The researchers said, “Using the Internet Movie Database as the source of background knowledge, we successfully identified the Netflix records of known users, uncovering their apparent political preferences and other potentially sensitive information.” Read more »

There has been considerable debate about the ethical, privacy, and civil liberty issues surrounding the unauthorized or unknowing retention and use of babies’ blood samples for purposes other than disease-screening in the United States and abroad. Often, parents are not told of the possible lengthy data retention period, possible distribution to other agencies, and possible other purposes for which their children’s blood samples could be used. Now, WNCN in North Carolina looks at the situation, and what it finds shows there are also questions about de-identification or “anonymization” of newborns’ medical data.

Asked what the government plans to do with the data, Scott Zimmerman, director of the N.C. State Public Health Lab, said, “So if an outside agency such as an academic institution approaches us and asks for dried blood spots, there are two approaches that can be taken. One, we can get parental consent to release that dried blood sample to an outside entity. We will not release any DBS that contains patient information without parental consent.”

Zimmerman added, “The only other way DBS are released is if they are de-identified.”

Researchers have shown that, often, data that has been de-identified can be re-identified (or “de-anonymized”), and sensitive data could be linked back to an individual. Therefore, there is a significant privacy concern for individuals’ whose information is shared, without their consent, in this manner.  Read more »

Vox reports on a decision concerning the privacy of medical data by by genetics testing company 23andMe:

The personal genetics testing company 23andMe is reversing plans to make a major change to its privacy settings, after a Vox story raised concerns about the move.

On September 9, we published a feature about some of the pitfalls of personal DNA testing, with a focus on 23andMe, a leading company in the field. We talked to some people who used 23andMe and ended up unexpectedly finding close family members they didn’t know they had. In one case, a professor’s parents divorced after the site revealed that his father had a child before he was married. We reported that 23andMe was planning to alter its user settings in a way that could make these unexpected reunions happen more frequently. […]

But, because of concerns raised by the Vox story, the company reversed its decision to make those changes. It is also going to hire a Chief Privacy Officer.

Read the Vox story for the full statement from the 23andMe chief executive.

InformationWeek reports on issues concerning children’s medical and genetic privacy:

For decades, hospitals have conducted blood tests on newborns, checking babies for various conditions, treatable and not. Today’s less costly tests, genomic research, and technological advances, coupled with differing policies across states, worry some privacy and ethics advocates.

Whereas some states allow parents to opt-in for testing, others have an opt-out approach. Critics argue parents have little to no say in whether this data is collected, where and how long it’s stored, and what organizations do with this information. Lower genome testing costs sparked debate about researchers’ right to use this information; who should learn of infants’ chronic conditions and when; and the type of data government, researchers, payers, or healthcare providers can cull. Other concerns surround the storage and transmission of data that’s not de-identified and its potential theft. […]

In May, Minnesota Gov. Mark Dayton signed a law allowing the state to indefinitely store blood spots for future research. Parents can opt out. In New York, parents can decline testing for religious reasons, said the Wadsworth Center, NY Department of Health, which screens the state’s newborns for more than 40 inherited metabolic conditions.