Regulating Genetic Information in Insurance

The use of genetic information is prohibited in health insurance to decide premiums. Australia's law reform committee provides protection against unfair discrimination and ensures high ethical standards in research and practices. The FDA regulates medical devices, while the healthcare reform allows health insurance companies to access genetic information for coverage decisions. In the UK, a concordat and moratorium on genetic and insurance have been updated to ensure fair and transparent use of genetic information by insurers. Canada has no specific laws regulating genetic testing for insurance purposes, but the industry code recommends that insurers not require genetic tests. The use of genetic information by insurers remains a controversial issue, with different countries having varying regulations.

Genetic Testing

Genetic testing
The genetic testing is defined as the DNA testing which allows the prediction of bloodlines and
the genetic diagnosis of vulnerabilities to the disease inherited by the parents. The testing is
called as the progeny testing in the agriculture which is used to examine the quality of breeding
stock. In human, the testing of genetic is used to determine the biological relationship between
the humans. In the broader sense, it comprises of biological test which is used to determine the
genetic disease among the people. The test is used to determine the changes in genes,
chromosomes and proteins. There is various type of genetic tests which is used to determine the
genetic disease, but earlier it is used to determine the number of an abnormal chromosome which
to inherited disorder (Domchek et al., 2013). In the present genetic test, the analysis of multiple
genes is done in order to determine the risk of determining the risk of specific diseases such as
cancer, heart disease and others. Other characteristics which are affected by the heredity include
mental abilities, natural talent and likelihood which lead to the disease.
It is mainly the analysis of proteins, metabolic and chromosomes in order to determine the
heritable disease such as mutations, karyotypes, genotypes and other which is used for the
clinical purpose. The genetic testing includes diagnostic testing, newborn testing, carrier testing,
and prenatal diagnosis, predictive and presymptomatic testing. The non-diagnostic test includes
paternity testing, forensic testing, and research testing and genealogical testing. The abnormal
trait has no effect on the health, and its minor effect is such as colour blindness, and major effect
is on the length of the life. The genetic testing is voluntary because it has some advantages as
well as disadvantages.

The process of genetic testing is done by taking the sample of skin blood, amniotic fluid or any
other blood issue. The newborn screening is done through taking the small blood sample of the
newborn baby, and other generic tests are required if required. The process of genetic testing
needs to be understood by an individual in order to understand the benefits and limitations of the
test with the consequences of the test. The quality assurance scheme is taken part by the laborites
in order to perform the good quality of genetic tests. The cross check is done by the scientists in
order to ensure the correct results. The genetic testing is similar to other medical information
which is considered for taking the decision regarding the cure of the patient. The genetic disease
is varied from one country to another. Every country needs to focus on the regulations in order to
balance the ethical merits and the insurance industry should abreast to the updated knowledge of
genetics to explain the different types of genetic tests.
Law & regulations of genetic testing
There are various laws at the state and federal level in order to protect people from the
discrimination genetic. In the federal law, it is known as the genetic information non-
discrimination act which is developed in order to protect the people against any kind of
discrimination. The result of a genetic test must be clearly communicated to the patient in order
to take corrective decisions. The results of genetic test affect the insurance coverage of people. In
the United States, more than thirty states have the legislation in order to prohibit the genetic
discrimination. In the France, the genetic tests are legally performed in the country. In German,
the human genetic examination act is approved by the parliament which banned all the direct to
customer genetic testing (Bernauer et al., 2016). Conducting the anonymous paternity test in
German is illegal. The advisory committee on genetic testing was made as a non-statutory

committee in order to meet the requirements of genetic tests services. The human genetics
commission was established in the United Kingdom for the development of human genetics and
its impact on the human lives. The human issue act is done for the non-consensual analysis of
DNA of the living person is illegal. The evaluation of genomic applications in practice and
prevention is established in 2004 to examine the effectiveness of the genetic tests which are
selected for the research and public health practices. The aim of the genetic test registry is to
enhance the examination of information regarding the use of genetic tests.
The genetic information non-discrimination act of 2008 is the act of congress of the United
States which is used to prohibits the information of genetic and health insurance (Slaughter et al.,
2013). The acts prohibit the denying of coverage by the health insurers to an individual or
charging the high premium from an individual based on the genetic disposition to develop the
disease in the future. The purpose of the act is to prohibit the discrimination on the basis of
genetic information with respect to employment and health insurance. The law prohibits the
employer to take the decision regarding the promotion, hiring, pay, privilege and other on the
basis of genetic information. The use of genetic information is prohibited for the health insurance
in order to decide the premium for the individual.
According to the Australia law reform committee, the committee provides protection against the
human genetic information. It provides protection against the unfair discrimination, and it
ensures the high ethical standard in the research and practices. The value of insurance for the
generic disorder is predicted by the insurance company.
In the clinical research, the FDA authority is granted by the congress for the use of the medical
device. The plans are announced by the FDA to regulate the LDTs.

Insurance policy
According to the health care reform, the genetic information can be accessed by the health
insurance company in order to take the decision regarding the health insurance coverage.
According to the Equality act, 2010 the employer can ask the health information regarding the
eligibility to perform the job (Graf et al., 2013). In the insurance underwriting practices, the
policy agreement is signed between the association of British insurers and government. The
recommendations on the processing of the personal health related data for the insurance purpose
includes various principles such as the process of health-related personal data should be justified
by the insurers; the personal health related data should be processed without the consent of the
insured, the storage of health-related personal data should provide adequate safeguard, the
genetic tests for insurance purpose should not be required, and the new scientific knowledge
should be taken into account by the insurers.
There is no law in Canada, but there are Canadian life and health insurance association industry
code on genetic testing which the insurers are not required to undergo a genetic test. In the rest of
the world, there are no specific instances which are taken for the genetic testing for the purpose
of insurance. It uses of genetic information by the insurance company remains the controversial
issue. The different countries have different regulations for the use of the genetic information by
the insurers.
Concordat & moratorium
The concordat and moratorium on the genetic and insurance have been updated in order to reflect
the extension of agreement till 2019. The annexure 2 has been added to the clarity regarding the

types of generic test. It is believed by the association of British insurers and Government that
there is a relationship between the insurance underwriting and medical data due to which the
insurance companies are allowed to access the genetic information in order to examine the price
risk in the interest of the consumers (Joly et al., 2013). The policy framework is designed which
is known as concordat for corporations in order to provide that the fair and the transparent
genetic information is used by the insurers. The elements of concordat include overall
framework, moratorium, reviews, future applications, monitoring, and complaints. The purpose
of concordat and moratorium is to ensure the fair right to access the genetic information. The key
principle of the concordat and moratorium is to provide equal access of information to the
customers and insurers, for example, the health status which is relevant for the underwriting. The
measure cover includes the nature and details of the information, the handling of information by
the insurers and use of that information (Varga et al., 2012). The results of predictive genetic
tests are not required to be disclosed by the customers. The purpose of the moratorium of the
United Kingdom is similar to ensure that are not debarred from the insurance which results of
genetic testing.

References
Joly, Y., Feze, I.N. and Simard, J., 2013. Genetic discrimination and life insurance: a systematic
review of the evidence. BMC medicine, 11(1), p.1.
Varga, O., Soini, S., Kääriäinen, H., Cassiman, J.J., Nippert, I., Rogowski, W., Nys, H.,
Kristoffersson, U., Schmidtke, J. and Sequeiros, J., 2012. Definitions of genetic testing in
European legal documents. Journal of community genetics, 3(2), pp.125-141.
Graf, M.D., Needham, D.F., Teed, N. and Brown, T., 2013. Genetic testing insurance coverage
trends: a review of publicly available policies from the largest US payers. Personalized
Medicine, 10(3), pp.235-243.
Slaughter, L., 2013. Genetic information non-discrimination act. Harv. J. on Legis., 50, p.41.
Bernauer, T., 2016. Genes, trade, and regulation: The seeds of conflict in food biotechnology.
Princeton University Press.
Domchek, S.M., Bradbury, A., Garber, J.E., Offit, K. and Robson, M.E., 2013. Multiplex genetic
testing for cancer susceptibility: out on the high wire without a net?. Journal of Clinical
Oncology, 31(10), pp.1267-1270.