Experimenting on humans – acceptance of genetic testing and screening

There are many ethical, political and social ideas surrounding genetic testing on humans. If overcome, genetic testing could lead to vastly improved healthcare, allowing for treatments to be developed which are personalised for the patient’s genetic make-up. This improved efficacy of treatments may allow patients to spend less time in care and improve patient recovery and quality of life.

In the future, genetic testing and screening may be widely considered to be acceptable. Human genetic tests are helpful in the diagnosis, prevention and treatment of disease. It could lead to more personalised and effective treatment, and result in better outcomes for patients. Such gene-specific treatments will improve the efficacy of treatments, allowing patients to spend less time in care and improving patient recovery. Genetic tests can also be used for presymptomatic testing, to detect predispositions to illnesses.

In its final report, published in 2012, the Human Genetics Commission concluded there are no specific social, ethical or legal principles to rule out the use of genetic screening as part of a population-wide programme. This programme would look at the DNA of prospective parents before they conceive to assess the risk of their children inheriting a range of hereditary conditions. Though the commission did not directly promote preconception screening, it suggested the practice would be ethically acceptable.

There are many ethical, political and social ideas, however. Some are worried the practice would lead to discrimination or what the media has named ‘designer babies’. There are also potential unintended consequences of gene therapy, as it may have effects that are not immediate but present in future generations.

On the other hand, Generation Y and future generations will be much more comfortable around technology and may be more accepting of gene technology, especially as research progresses and it becomes better understood.

Sources or references

• Interviews with healthcare professionals as part of the CfWI’s Medical and Dental Student Intakes project, 2012
• Human Genetics Commission, 2012, The Human Genetics Commission: Final Report
• Norrgard, K. 2008, Ethics of genetic testing: medical insurance and genetic discrimination, in Nature Education
• Sade R, and Khushf G., 1998, Gene therapy: ethical and social ideas
• http://www.woodrow.org/teachers/bi/1992/gen_screen1.html
• http://www.ndsu.edu/pubweb/~mcclean/plsc431/students/boris.htm
• http://www.nhs.uk/news/2011/04April/Pages/hgc-examines-ethics-genetic-testing.aspx http://www.ethicsofthefuture.com/

Some of the information in this section is provided by stakeholders and expert groups, and does not necessarily represent the views of the CfWI.