The social implications of the new genetics

chapter 35 The social implications of the new genetics


Developments in molecular genetics have major implications for society and individuals, doctors and patients. The knowledge and techniques which have arisen from the development of recombinant DNA are likely to affect profoundly how we think about and deal with health, risks to health, disease and illness (Cunningham-Burley & Boulton, 2000; Pilnick, 2002). The search for genetic components to a range of diseases, behaviours and traits is well under way.


These developments influence the social, cultural, ethical and personal realms as well as the biological, and have implications for some of the fundamental principles that guide research and clinical practice – confidentiality, autonomy, informed consent and individual choice. Scientific developments in genetics promise great improvements in health, understanding and treating disease and increased control and choice for individuals, especially in relation to reproduction. Many scientists, clinicians and others take the social and ethical implications seriously and contribute to the important debates about how this knowledge may be used (Nuffield Council on Bioethics, 1993; www.hgc.gov.uk).



Genetic testing


The genes for many single-gene disorders have been identified, and genetic components in common multifactorial conditions are now being researched. Testing for a range of genetic diseases (e.g. for late-onset dominant conditions or for carrier status for single-gene recessive disorders) is now available in many industrialized countries. Experience gained in the introduction of existing genetic-testing programmes provides a good illustration of the social, cultural and ethical issues involved, and may help shape the application of scientific development in the future.



Predictive testing: Huntington’s disease


Huntington’s disease is an autosomal-dominant condition. All those who inherit the gene will develop the disorder; it is of late adult onset, fatal and untreatable. Definitive testing is now available that can identify those who will develop the disease. At first glance, the provision of predictive testing within families known to be at risk of Huntington’s disease may seem to be desirable, not least because individuals who have been identified as inheriting the gene may wish to make particular reproductive choices or plan for their own future. However, the possibility raised by genetic testing brings with it specific concerns about the rights of individuals to know or not know their genetic status, the rights of other family members to information and the psychological impact of a positive result. Moreover, the experience of introducing predictive testing for Huntington’s disease has thrown up other pertinent issues, and few individuals have actually come forward for testing (Richards, 1993). Those who have fall into three different groups:


1. Those who want to be tested in order to plan their lives or avoid passing the gene on to children.

2. Those who want to obtain an early diagnosis (they are already suspecting symptoms).

3. Those who want to establish that they are free from the disease (they are past the age when they would be likely to develop symptoms).

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Jun 10, 2016 | Posted by in PSYCHOLOGY | Comments Off on The social implications of the new genetics

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