Here is an assignment I had for Ethics, in which our prof asked us to imagine we were the health commissioner recommending a newborn screening plan.....

State Health Commissioner Report: "Our genes are not common property, nor is the 10 dollar bill in your pocket...."

It is undeniable that novel techniques have expanded our ability to screen for disorders and diseases such as type I diabetes, severe combined immunodeficiency, fragile X syndrome, hereditary haemochromatosis and lymphoblastic leukemia that were previously unidentifiable in newborns. These new tools provide great potential for improving the health of individual children and populations. With this acknowledgement however, I believe that policy that actively facilitates parental involvement in decision making will not discredit the importance of newborn screening, while mandating screening without consent will inevitably collide with more than one Public Health Code of Ethics. As the health commissioner, I have weighed the issue considerably, and feel that it would be in the best interest of the state and its people to implement policy that mandated routine screening which involves advance notification that allows an “opt in” consent process. In addition, I would implement educational programs that promote understanding on issues that involve genetics due to my discovery that many people do not have awareness of the benefits and concerns surrounding newborn screening.

To begin, I would like to address the contradicting claim that DNA is not determinant, yet claiming that screening holds a critical place in the prevention and treatment of genetic disorders. To claim that newborn screening does not imply that genetics dictates one’s future, but then to argue that it is in the public’s interest to protect newborns from disorders to the point of removing that protective role from parents is faulty. In order to mandate required screening, one must concede to its importance. That being said, I would argue, that irrespective of the benefits that result in newborn screening, one must take into consideration the implications of a mandate that removes at least a portion of informed consent from the process. This may in fact set a precedent that would result in the assumption that government should always trump cultural or religious values concerning health care. While science and public health efforts have made great strides toward reducing mortality and morbidity, who’s to say that these fields should be the ‘be all end all’ in health care? Most well-trained geneticists will admit that we do not know all there is to know about the role of genetics, and to falsely highlight one particular gene as a determinant of a particular disorder can be risky if this gene may not be fully responsible. Parents, physicians, and health care workers all need to be well-informed of this process due to some of these risks.

I would also argue that removing consent from this process does not fully comply with at least three of the public health code of ethics endorsed by the APHA. The first one that I will consider is that “public health should achieve community health in a way that respects the rights of individuals in the community”. While Thomas et al. (2005) points out that genomics promotes interdependence within individuals in communities, it is essential to note that the lack of consent for newborn screening is an inherent removal of parental right. One might argue that this removal is only in exchange for the improvement and protection of community health. However, one could not compare newborn screening to something like mandatory vaccinations, due to the main difference between communicable disease versus inherited disease. Realistically, while there are exceptions depending on semantics, one could not ‘infect’ another individual with an inherited disease. The idea of labeling human genetic data as a form of ‘common property’ as Bernheim et al. touches on can be quite concerning when applied to other leaps of thought such as labeling things like money/resources as common property if it provided improvement to the health of the general population—only because we do not live in a Communist state. I believe that we should respect autonomy on this matter, and it is my prediction that informed consent will not produce such a detrimental decline in newborn screening data for research purposes—since that seems to be the primary concern. In general, it would appear that most parents are willing to accept programs that would benefit the health of their children, it is the idea of storing these results that does not appeal to many.

The second code of ethics that would be compromised with screening that lacked consent would be: “public health should advocate for or work for the empowerment of disenfranchised community members ensuring that the basic resources and conditions necessary for health are accessible to all people in the community”. We must ask ourselves, ‘who benefits’ from newborn screening? Studies show that the wealthier have lower morality and morbidity rates than the poor. We must consider that fact that some spheres in society would not be able to provide follow up treatment with discovery of a newborn disease—and, to some extent, nor does the government provide a solution to this problem. Thus, mandating newborn screening may only benefit those who can afford the results.

Finally, I would like to point out that going along with the code that prescribes input from community members, we would also need to evaluate how effective this mandate would be in incorporating diverse values and beliefs in the community. Not requiring a consent process inherently takes away from this input from sectors in society that for religious or cultural reasons would prefer not to take part in newborn screening. With a consent process, the government would be actively acknowledging diverse perspectives on the value of newborn screening, and allowing parents to make these decisions.

In conclusion, I support efforts that would incorporate informed consent in order to recognize the value of parental decision making.

Thomas, J., Irwin, D., Zuiker, E. & Millikan, R. (2005). Genomics and the Public Health Code of Ethics. American Journal of Public Health, 95(12), 2139-2143.