Craig Westover is a writer and columnist for the St. Paul Pioneer Press. During our third week of the public health gneomics classes at the 2007 Public Health Institute at the University of Minnesota, he provided the libertarian / free market perspective in a discussion with Anne Berry, former Commissioner of Health and current Deputy Commissioner of the Department of Health and Human Services.
In this column, Mr. Westover reflects on the role of government in genetic testing, the recent issues related to the storage and use of newborn screening bloodspots for program quality assurance and new test development. Here, in its entirety, is his article published on July 26, 2007 in the St. Paul Pioneer Press.
Does the end justify the genes?
Article Last Updated: 07/26/2007 09:44:49 PM CDT
Of all our natural rights, none is guarded more zealously than the right of personal privacy, especially when it involves private matters of personal health. Yet, as medical technology advances and public health costs demand action, the boundary between privacy rights and the "common good" is increasingly strained.
Genomics - the study of genes and their roles in disease - offers enormous potential for bettering public health and reducing health care costs. Those are worthy ends. But they require genetically screening a significant number of individuals for predisposition to disease. Using the coercive power of government to enforce genetic screening and research runs smack dab against the unalienable right of personal privacy.
That's the crux of an argument between the free-market health care advocacy group Citizens Council on Health Care (CCHC) and the Minnesota Health Department over rules governing genetic screening of newborns. The dispute crystallizes the conflict of individual rights versus the common good.
At stake is more than a theoretical "slippery slope" argument about the dangers of government collection of personal data. It's a classic case of the seen versus the unseen. The visible results of genetic testing are measured in children's lives. The unseen, unintended consequences are individual psychological, social and financial risks including social stigma, insurance and employment discrimination. Given individual concerns, detailed counseling,
informed consent and confidentiality should be key elements of any genetic testing program.
The CCHC has long criticized the Health Department's rules on infant genetic screening, arguing that they didn't provide well enough for parental consent, gave the department long-term ownership of children's DNA and allowed the department to use infant DNA for genetic research without parental consent - all in violation of Minnesota's Genetic Privacy Act. In March, an administrative law judge, while approving many of the health department's rules, agreed and instructed the health department to make corrections.
The health department appealed the judge's decision prohibiting it from keeping and using genetic material without parental consent, arguing that genetic material is necessary to create and improve tests required by law. Parents may request that blood samples and records be destroyed within 24 months of testing; however, the department argued, if parents do not exercise that option, the department may retain samples.
The chief administrative law judge denied the department's appeal. CCHC president Twila Brase then upped the ante by sending a letter to health commissioner Dianne Mandernach calling on her department to destroy all newborn blood samples obtained without parental consent and to recall and destroy all blood samples distributed for research purposes. In a second faxed letter, Brase requested that Gov. Tim Pawlenty require the MDH to destroy all newborn blood samples by Aug. 14.
What we have here is a failure to communicate.
Brase's tenacity in defense of the principle of privacy rights is something we need more of - especially from politicians who would too often raise the votes of the many over the rights of the few. In a free society struggling to remain so, enhancing individual rights and independent choice must be the starting point of any policy discussion.
That said, infant genetic screening is not some Moreauian experiment involving jungle animals. The Minnesota Department of Health is charged with developing screening tests for genetic abnormalities that have serious health consequences. It has done so with positive results.
Minnesota's public health laboratory tests for 53 congenital disorders. The health department claims genetic screening improves or saves more than 140 children's lives each year. It attributes this achievement in part to its access to collected and retained genetic material, the infant blood samples Brase wants destroyed.
So, does the end justify the genes?
Individual privacy versus the common good: Which takes precedence? The question is not that simplistic. Individual privacy ought to be our first concern as we consider government's role in genetic screening - the first, the foremost, but not the only consideration. Public health can trump individual rights, but the burden is on the state to meet a standard of necessity to do so.
A reasonable person will recognize that genetic screening of newborns has huge potential benefits for individuals and society.
A reasonable person (in a free society) should also question whether the state ought to be the agent that collects and stores individual DNA and whether it ought to be allowed to do so without meaningful informed consent.
The Minnesota Health Department makes a strong case for the benefits of genetic screening, but this is a larger debate; it is ultimately about defining the difference between those things government can do (virtually unlimited) and those (limited) things government should do. The MDH has not yet made the case for the necessity of the state performing infant genetic screening.
Craig Westover, a writer who lives in Afton, blogs at craigwestover.blogspot.com. His e-mail address is firstname.lastname@example.org.