That law, ridiculous! I am in the way of fact-finding.
Nowadays companies such as 23 and Me and Ancestry are busy spreading genetic testing, and it is usual that protection of privacy of genetic data should be further strengthened. However, the Congress of the United States is acting to further threaten already weak protection against genetic discrimination. But scary like a dystopian citizen is a discrimination on the basis of the gene, improper genetic privacy laws that would in drove into a corner of the science that the scientists I know most vigilant in.
Robert Green, a geneticist at the Harvard Medical School of Medicine, mentioned that "both clinical care and research are being hindered." Mr. Green is studying the impact of genomic medicine on people's health and behavior. Of particular interest are the factors that agree with genetic testing? That. And the reverse of the reason up to deny the inspection is, " may be genetically discrimination or not is a sense of crisis", it has been with the observation.
To Genetics such as Mr. Green, it is necessary to conduct genomic sequencing genome analysis of thousands of people in order to trace how a specific gene affects a specific disease, and It is laborious, it takes a huge amount of time. So refusing the examination that may be useful for treatment because of the sense of crisis against genetic discrimination has the potential to be disappointing.
Mr. Green says "People are concerned that if they have dangerous genes remain in the medical record, there is some adverse effect in some way ".
In 2008 the United States Congress, insurance companies and employers to request genetic testing, in order to prohibit the use of to, such as the determination of the deductible, was established "the United States genetic information Discrimination Act - Genetic Information Non-Discrimination Act: GINA. However, since protection of GINA is not applied to life insurance, long-term care, disability insurance, these companies can demand genetic information and can refuse people judged to be dangerous. Currently replacing medical cost burden optimization law is to solve this GINA problem by protecting against discrimination against contract pre-emergence which becomes clear by a genetic test. On the other hand, another bill currently being deliberated at the House of Representatives HR 1313 is that the employer allows the employee to undergo genetic testing and refuses employees to impose heavy fines.
Mr. Green warns against the movement of such a bill.
Opportunistic discrimination opportunities are about to be introduced to the workplace.
Mr. Green has begun to consider how this will affect health care and research outcomes. Data showing considerable impact has been found in a project.
To investigate how infant genetic sequencing affects health management as part of a major research at the National Institute of Health (NIH), Green team and colleagues reported that more than 2,500 newborn parents "I can receive sequencing for free" I asked. Of these, 325 newborn parents agreed to participate in the information session, but only 57 people actually. participated.
Mr. Green's team is continuing to investigate why parents answered "yes" or "no" for genetic testing. Green has made clear that privacy concerns may play an important role.
People are refusing genetic testing for privacy and genetic discrimination especially concerns about insurance discrimination. This hinders biomedical research and access to people's medical care.
Many people are dissatisfied with an insufficient protection of hereditary privacy, but insurers and employers claim that there is a business reason to clarify genetic information. The more information about the risks to be guaranteed, the more insurers may be able to provide more affordable and efficient products.
Mr. Green cited a good example in the UK how to approach this issue. Insurers and governments have reached an agreement to guarantee the right of insurance and the right for insurance companies to access information that can affect risk. If an insurance company sets up a risk assessment based on genetic test data, it must set a higher hurdle than a typical one. In other words, even if you are a carrier of a gene that causes disease, insurance companies do not seem to be known. In addition, it is guaranteed that insurance companies can not demand consumers to conduct inspections, or can not demand inspections conducted in the course of medical research or sharing of genetic testing information of relatives.
"There are ways to satisfy the business needs of companies as well as to satisfy consumers' privacy," Mr. Green suggests a way to solve it. But ... Unfortunately, for now, it seems that the genetics community is only "amazed".
