A recent article in the Minneapolis-St. Paul Star Tribune indicates that the controversy between the Minnesota Department of Health (MDH) and the Citizen’s Council on Healthcare (CCH) regarding collection and retention of newborn blood samples remains a live issue. Reporter Chen May Yee invoked our pathos by using the “sick baby” card, framing the debate as one between a camp committed to genetic screening to save newborns and a gang of privacy advocates, outlandishly exaggerating the harms resulting from applying the Minnesota Genetic Privacy Act. Yee describes the newborn screening program as a small intrusion necessary to save lives while characterizing CCH’s concerns as fear of the unknown.
The article misrepresents CCH’s objections and presents a mutually exclusive approach to newborn screening: perform newborn screening or apply the Minnesota Genetic Privacy Act which requires parents to consent to the blood collection, genetic screening tests, and retention of the blood samples for future research use. As the administrative courts have ruled, the Minnesota Genetic Privacy Act does in fact apply to newborn screening practices. In theory, application of this law provides even more public benefit: parents consent to allow newborn screening, they can consent to the MDH’s retention of blood samples for more research to develop new screening tests, and the law ensures parents have an informed understanding of each process and its value.
MDH’s chief legal counsel David Orren stated that “data in the hands of public health is very different from the data in the hands of an identity theft or hacker.” Yet, as long as the MDH was not in compliance with the law and they do not have specific permission to retain this information, can their status as a government agency change the fact they should not have or retain these samples and information? -- Katherine Drabiak