Science & Technology

KEY POINTS

Genetic testing

·         It is a type of medical test that identifies changes in chromosomes, genes, or proteins.

·         The results of a genetic test can confirm or rule out a suspected genetic condition or help determine a person’s chance of developing or passing on a genetic disorder.

·         Genetic testing is gaining recognition for the many advantages it had offer such as –

a)     It presents an opportunity for individuals to become informed about their genetic predisposition to disease.

b)     It offers couples to be aware of the possible genetic characteristics of their unborn children.

c)      It provides individuals with information needed to make important decisions about their future, therefore supporting their right to make an informed choice.

·         Stemming from the informative potential of genetic testing some critical ethical, legal and social issues come to the forefront.

Implications

Individual’s right to choose

·         Many communities encourage couples to perform genetic testing prior to marriage as well as during pregnancy, to determine any risk of disease.

·         While this strategy has effectively reduced the prevalence of some genetic diseases like thalassaemia, it is argued that it limits the individual's freedom of choice.

·         Couples may be coerced into genetic testing with little regard for obtaining their free and informed consent.

·         This is particularly true for women who are often under pressure to conform to their family decisions.

·         In low to middle income countries, where treatment is expensive, not many options are available for parents and the termination of a pregnancy may be viewed as the most practical response in economic insufficiency.

Confidentiality

·         Genetic tests give an assessment of an individual's inherent risk for disease and disability. This predictive power makes genetic testing particularly liable for misuse.

·         It is important, therefore, to ensure the confidentiality of test results, and to establish legislation permitting only selective access to this information.

·         Respecting a patient’s confidentiality by not disclosing the results of a genetic test to third parties can therefore conflict with the well-being of family members, who could benefit from this knowledge.

·         Finding the right balance between the patient’s privacy and what is in the best interests of family members is an ongoing ethical and social challenge.

Stigmatisation and discrimination

·         Socially, knowledge from genetic tests may lead to stigmatization and discrimination within the community and lead to the marginalisation of the individual from mainstream society by virtue of the health risks identified.

·         In particular, knowledge of risk of disease may be used by health insurance providers and employers to deny individuals employment, benefits and allowances and medical coverage or health insurance.

·         This is especially worrisome in communities that rely heavily on private insurance systems as a source of funding for necessary medical treatments.