Putting The "public" in Public Health
Genomic information is relevant to each member of society, and as the science progresses, major efforts must be made to involve the public in that research and subsequent policy. A trend is emerging toward partnerships between communities and scientists, with the results being disseminated to policymakers. Some public policy issues include: storage of repositories of genetic information (e.g., neonatal genetic screening; storage duration, ownership, allowed uses, access control, privacy protection; discrimination by employers and insurers based on access to personal genomic information; access to technology that makes personalized genetic information available to patients. A public website (geneforum.com) serves as a discussion forum for such public policy issues.
Public policy has an important role in protecting against genetic discrimination, defined in Taber's Cyclopedic Medical Dictionary (2001) as unequal treatment of persons with either known genetic abnormalities or the inherited propensity for disease; genetic discrimination may have a negative effect on employability, insurability and other socio-economic variables. Public policy in the U.S. to protect individuals and groups of people against genetic discrimination include the Americans with Disabilities Act (1990) ADA, Executive Order 13145 (2000) that prohibits genetic discrimination in the workplace for federal employees, and the Genetic Information Nondiscrimination Act (2007, first introduced in 2003).
Main public concerns in genomic information are that of (1) Confidentiality (2) Misuse of information (Discrimination by health plans, employer, and medical practitioners) (3) Right and access to genetic information.
It is important to cater to these concerns while evolving policies to further the cause of genomics and its application. Progress in public health genomics will slow down without large-scale community participation. It requires involvement of diseased members, members at high risk and people at low risk to understand the interaction between genes and the environment and its consequence. This involvement needs to be encouraged guarding the individual interests of the citizens. Involving public, by educating them about this emerging field, in policymaking can booster confidence in science, facilitate research and its application.
Read more about this topic: Public Health Genomics
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