In 2009, Argentina’s Congress passed a law authorizing “the forced extraction of DNA from people who may have been born to political prisoners slain a quarter-century ago – even when they don’t want to know their birth parents,” reported the Associated Press. Predictably, there has been litigation over the law and whether it is an illegal invasion of individuals’ bodies and identities. Now, BBC News has an update:

An Argentine court has ruled that the heirs to the country’s main media group must submit to DNA-testing, to see if they were born to left-wing prisoners killed by the military in the 1970s.

Judges ruled that Marcela and Felipe Noble Herrera – adopted children of the Clarin Group owner – must give direct samples such as blood or saliva. They will be compared with samples on a genetic database linked to the missing. The siblings object to the tests. Their mother says their adoption was legal. [...] Read more »

I’ve written before about the unauthorized or unknowing retention and use of babies’ blood samples for purposes other than disease screening. The Washington Post has written about the ethics and privacy issues when children’s medical data is collected and retained without parents’ knowledge or consent.

In mid-2010, Texas announced that, as part of a lawsuit settlement agreement, it would destroy five million blood samples taken from babies and used for research without their parents’ consent. The blood was originally gathered to screen for birth defects. The Texas Tribune later revealed that Texas officials also “were turning over hundreds of dried blood samples to the federal government to help build a vast DNA database.”

Privacy issues connected to newborns’ blood samples have been raised internationally, as well. In New Zealand, the Privacy Commissioner warned against expanding the use of such genetic data beyond disease testing, noting DNA is the “ultimate marker of identity.” A Tel Aviv University researcher’s article in Science said we don’t know the future privacy or civil liberty implications of distributing children’s genetic data.

Now, Minnesota Public Radio discusses the issue of privacy and babies’ blood samples:

On Tuesday, parents, doctors and researchers urged state lawmakers to reject proposed restrictions on Minnesota’s Newborn Screening program — changes that could keep other parents from such lifesaving results. Read more »

The Council for Responsible Genetics, GeneWatch UK, and Privacy International have joined together for “a project that seeks to achieve a direct impact on the human rights standards adopted for DNA database legislation across the world.” They have created new information resources that outline the global growth of DNA databases and the human rights issues implicated by their dramatic expansion.

The groups explain the privacy and civil liberty problems in “Forensic DNA Databases and Human Rights“:

The use of forensic DNA databases by law enforcement agencies around the globe is expanding unchecked at an alarming rate and efforts are underway to harmonize them. Resources must be mobilized to establish strong standards and universal safeguards for this most invasive form of surveillance and profiling.

A crime prevention tool that was originally intended only to identify the most dangerous convicted felons on a case by case basis, DNA collection and analysis is now routinely being used for a multiplicity of purposes that pose significant privacy and civil rights concerns to every citizen. DNA is far different from other methods of identification such as fingerprints. It is a window into an individual’s medical history and that of their entire family. From the permanent retention of DNA samples of individuals never convicted of a crime, to DNA “dragnets” devoid of individualized suspicion and weak safeguards for the information once it is collected, the issues raised by the expanding use of DNA databanks pose a very serious threat to democracy. [...] Read more »

The Economist has posed this statement concerning medical privacy and electronic health records: “This house believes that any loss of privacy from digitising health care will be more than compensated for by the welfare gains from increased efficiency.” The moderator says: “Britain’s health system is undergoing a painful and costly process of digitisation. Thanks to some $30 billion of federal subsidy from the Obama administration to come over the next five years, so too will America’s. Many other countries are watching. Consumer advocates worry that if the move is rushed, patient privacy will suffer. [...] Supporters argue that health information technologies have advanced to the point that such concerns are vastly overblown.”

The magazine has asked for public opinions at its site, and it published two opposing viewpoints from experts. On one side is Peter Neupert, corporate vice-president at Microsoft Health Solutions Group; on the other is Deborah C Peel, founder of Patient Privacy Rights and leader of the Coalition for Patient Privacy.

Neupert says:

But first let’s acknowledge that the status quo is not really an option. The health economy must move into the digital age, not to drive increased efficiency per se but to improve value. The Institute of Medicine (IOM) Roundtable on Value and Science-driven Healthcare defines value as a function of quality (improved outcomes/life years) compared with costs over time, whereas efficiency is often focused on achieving more volume with the same or fewer resources. [...]

To date, what we have essentially done is digitise our existing systems—that is, take what we did on paper and make it electronic. As a result, our current system has been built primarily around providers, insurers, the government and employers—not around consumers. So the data related to my hospital visit is owned by the hospital, and the medical information my primary care physician (PCP) has collected about me stays with that organisation, even if I move to another PCP or another city. But if we want effective electronic health records, the information needs to move with the patient and not stay locked in separate institutional silos that make it hard to get a comprehensive, longitudinal view. While many in the industry understand this and are moving in this direction, the pace remains very slow. Read more »

Federal regulators have published a final rule for implementation of the Genetic Information Nondiscrimination Act of 2008 (Pub. L. 110-233). GINA, which was signed in May 2008 by President Bush, restricts the collection and use of genetic information in a number of ways. GINA prohibits health insurance providers and employers from requiring genetic testing. Genetic data cannot be used to determine insurance premiums, eligibility for insurance, or employment.

GINA Title I’s health coverage provisions apply to group health plans sponsored by private employers, unions, and state and local government employers; issuers in the group and individual health insurance markets; and issuers of Medicare supplemental (Medigap) insurance. [...] Title II of GINA prohibits use of genetic information in the employment context, restricts employers and other entities covered by Title II from requesting, requiring, or purchasing genetic information, and strictly limits such entities from disclosing genetic information. [...]

The Commission published a proposed rule to implement Title II of GINA on March 2, 2009, and asked for public comment on the proposed rule, the discussion in the preamble, and other Title II issues not addressed in either document. See 74 FR 9056 (March 2, 2009).

The regulation report includes a section-by-section analysis of the rule. I suggest reading this part first and then looking more closely at the regulation itself. Here’s the analysis on “general purpose.” Read more »

Center for Democracy and Technology Policy Counsel Harley Geiger (a friend and colleague) takes a look at a proposal at the Department of Health and Human Services that would affect the privacy of people who have been dead for 50 years. (Related: We’ve discussed controversies over the unknowing use of individuals’ DNA reasons beyond what was stated when the samples were taken. Arizona State University recently settled a lawsuit by the Havasupai Indians. DNA samples that were given to university researchers to study the tribe’s high rate of diabetes were also used — without their consent, tribe members say — “to study many other things, including mental illness and theories of the tribe’s geographical origins that contradict their traditional stories.” And in Texas, the Texas Tribune revealed that Texas officials “were turning over hundreds of dried blood samples to the federal government to help build a vast DNA database.”)

Geiger writes:

Currently, the law requires that the health information of the dead be protected in the same manner as that of the living. Generally speaking, health care organizations can use patient data for treatment, payment and operations purposes without the consent of the patient, but must get the consent of the patient for most other purposes, like marketing or research. When the patient is deceased, health care companies must seek consent from the dead person’s personal representative, like the executor of the estate. Read more »