Confidentiality of Information in Newborn Genetics Testing
Posted: Wednesday, September 07, 2011
by Rose-Marie Chaperon
Chaperon Consulting, LLC
The subject of interest to me this week is the privacy and confidentiality regarding genetics information in newborn testing. Identifying genetic factors that could reliably predict health risks for individuals has the potential to bring great health benefits, both for the individuals concerned and for health-care providers. The way newborns genetics information is handled and distributed is of great concerns to me; therefore I disagree with conducting such test on newborns. I am aware that collecting genetic profiling at birth would allow a person's genome to be analyzed at an early stage, and the data electronically could be stored for future use. Although this might seem like an attractive proposition, it carries with it serious ethical and social concerns that would need to be addressed if the genetic profiling of newborns were ever to be considered on a population-wide basis.
It's true that others may argue that testing newborns for genetic diseases is for the greater good, they would take the Utilitarianism approach which is an ethical theory holding that the proper course of action is the one that maximizes the overall "good" of the society. It is thus a form of consequentialism, meaning that the moral worth of an action is determined by its resulting outcome. The Utilitarian approach might agree that newborn genetics information should be made available or even widely publicized because this allows other members of society to be screened and make decisions that affect their families. The information could dissuade individuals from having children and passing on the genetic defect if they are aware of their mates’ genetic information. Knowing of a disorder or preventing the passing of a genetic disorder by a couple deciding not to have children could save large amounts of money for treatments often paid for by society. Another argument would be that medical information is protected under HIPAA and the government will ensure that everyone’s privacy is protected and hospitals have an obligation to follow the law.
I beg to differ, although I agree that test results are protected under HIPAA, and health care facilities have a legal and professional duty to keep information about their patients confidential. However, under certain circumstances, they are required by law to report particular events or conditions to the appropriate government or regulatory agencies. These are mandatory reports. Failure to make a mandatory report may result in the imposition of penalties ranging from a fine to allegations of professional misconduct. When these genetics data are reported on these children they are entered into a national health data repository where that information is available to insurance companies. So having access to that information can be used by insurance companies to discriminate against patients. Although there is no empirical evidence of widespread discrimination, the public fear is created by publicized accounts of genetic discrimination.
Furthermore, it is important to also remember that the Genetic Information Nondiscrimination Act (GINA) does not prevent insurance companies from considering an individual’s current health status in determining eligibility or setting premiums when an individual applies for or renews his or her coverage. GINA relates only to genetic information; it does not provide protection for individuals with manifested diseases. Until the US government makes plans to improve its policies on protecting the collection of genetics data on newborns genetics testing, my position will stay the same.
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