Ethical, Legal and Social issues

Relevant ethical, legal and social issues in community genetics in low- and middle-income countries

Ethical and legal issues in community genetics

Ethical, legal and social issues in community genetics are specific for communities, countries and regions, because of cultural, historic and religious factors. Principal ELSI in genetics include the following:

  • inequities in access to genetics services in general, as a result of lack of trained geneticists, underfunding in the public sector and poor coverage by social and private health insurance;
  • inequities in access to prenatal diagnosis. This is not usually provided by the public sector. However, in the private sector it is relatively well developed and follows market rules, in many instances with no clear indications, no quality control, no statistics and no known outcomes;
  • legal restrictions for the termination of pregnancies affected with fetal defects, with inequity in its enforcement, as those with economic means can access safe pregnancy termination.
  • deficiency of health professionals with adequate training in clinical genetics, genetics counselling and genetic
  • weakness of regulations to enforce privacy of genetics
  • overt or covert discrimination to, and stigmatization of, people with disabilities and patients with congenital disorders and genetic
  • weakness of parent–patient organizations, which need to be better
  • weak or non-existent governmental regulation of genetic tests, resulting in the introduction of testing according to commercial interests without demonstration of clinical validity or utility, or provision of genetic
  • lack of appropriate control of international collaborative genetic research initiatives, which should ensure proper ethical safeguards and concerns for technology transfer and capacity building.

 

Confidentiality issues

Clinical genetics practice has some responsibility for informing relatives of the affected of their “at-risk” status when that is the case. Genetic registers incorporating long-term follow-up and a proactive approach to at-risk subjects have been recommended as a means of improving access to genetic counselling for families with inherited disorders. Carrier individuals have the right to know what genetic risks there are in having affected offspring and the ways in which that risk could be avoided (e.g. by not marrying a close blood relative or another proven carrier, or having prenatal diagnosis in gestation when the disorder is diagnosable in utero).

However, the right of family members to this information may conflict with the proband’s right to confidentiality. Initial WHO guidelines on ethical issues in medical genetics suggest that, where appropriate, and as part of their general duty to educate, counsellors should inform clients that genetic information could be of importance to their relatives. Under these circumstances, individuals might reasonably be invited to request their relatives to seek genetic counselling (WHO 1998).

A more recent WHO report changed the balance of the advice recommended for highly consanguineous communities in which arranged marriage is commonly practiced. Since a genetic disease could potentially influence all members of the extended family, in such communities, it was proposed that respect for patient confidentiality may need to be considered alongside the rights of other family members, for whom information about genetic risk could influence decision-making on their own health or reproductive choices (WHO 2006a).

 

Ethical standards for community genetics services

The principal ethical standards for community genetics services are based on maximizing benefit, minimizing harm, respecting privacy and autonomy and ensuring equity (WHO 1998;  WHO 2006a; WHO 2006b; Ten Kate et al., 2010) and can be summarized as follows:

  • fair allocation of public resources so that genetics services reach all those in need (justice);
  • freedom of choice in all matters relevant to community genetics services; the necessity of voluntary approaches in services, including approaches to testing and treatment; the avoidance of coercion by government, society, or health professionals (autonomy);
  • respect for human diversity, religious, cultural and social beliefs and psychosocial well- being (autonomy, non-maleficence);
  • education in genetics for the public, medical and other health professionals, teachers, clergy and others (beneficence);
  • provision of ongoing quality control of services, including laboratory procedures (non- maleficence).