Genetic Exceptionalism
   HOME

TheInfoList



OR:

Genetic exceptionalism is the belief that
genetic information A nucleic acid sequence is a succession of bases signified by a series of a set of five different letters that indicate the order of nucleotides forming alleles within a DNA (using GACT) or RNA (GACU) molecule. By convention, sequences are usu ...
is special and so must be treated differently from other types of medical data or other personally identifiable information. For example, patients are able to obtain information about their blood pressure without involving any medical professionals, but to obtain information about their genetic profile might require an order from a physician and expensive counseling sessions. Disclosure of an individual's genetic information or its meaning, such as telling a woman with red hair that she has a higher risk of skin cancer, has been legally restricted in some places, as providing
medical advice Medical advice is the provision of a formal professional opinion regarding what a specific individual should or should not do to restore or preserve health. Typically, medical advice involves giving a diagnosis and/or prescribing a treatment for ...
. That policy approach has been taken by state legislatures to safeguard individuals' genetic information in the
United States The United States of America (U.S.A. or USA), commonly known as the United States (U.S. or US) or America, is a country primarily located in North America. It consists of 50 states, a federal district, five major unincorporated territori ...
from individuals, their families, their employers, and the government. The approach builds upon the existing protection required of general health information provided by such laws as the
Health Insurance Portability and Accountability Act The Health Insurance Portability and Accountability Act of 1996 (HIPAA or the Kennedy– Kassebaum Act) is a United States Act of Congress enacted by the 104th United States Congress and signed into law by President Bill Clinton on August 21, 1 ...
.


Expert debate

There is ongoing debate over whether or when certain genetic information should be considered exceptional. In some cases, the predictive power of genetic information (such as a risk for a disease like
Huntington's disease Huntington's disease (HD), also known as Huntington's chorea, is a neurodegenerative disease that is mostly inherited. The earliest symptoms are often subtle problems with mood or mental abilities. A general lack of coordination and an uns ...
, which is highly penetrant) may justify special considerations for genetic exceptionalism, in that individuals with a high risk for developing this condition may face a certain amount of discrimination. However, for most common human health conditions, a specific genetic variant only plays a partial role, interacting with other genetic variants and environmental and lifestyle influences to contribute to disease development. In these cases, genetic information is often considered similarly to other medical and lifestyle data, such as smoking status, age, or
biomarkers In biomedical contexts, a biomarker, or biological marker, is a measurable indicator of some biological state or condition. Biomarkers are often measured and evaluated using blood, urine, or soft tissues to examine normal biological processes, pa ...
.


See also

*
Genetic privacy Genetic privacy involves the concept of personal privacy concerning the storing, repurposing, provision to third parties, and displaying of information pertaining to one's genetic information. This concept also encompasses privacy regarding the abi ...
*
HIV exceptionalism HIV exceptionalism is the term given to the trend to treat HIV/AIDS in law and policy differently from other diseases, including other sexually transmitted, infectious, lethal diseases. The term first appeared in print in an article in the ''New ...
, similar rules for HIV/AIDS testing


References


External links

* Includes a state-by-state summary table on genetic privacy laws, but information is not being updated. {{DEFAULTSORT:Genetic Exceptionalism Health policy in the United States Privacy Information privacy Genetics