Ethics

The Ethics of Genetic Testing and Screening

Genetic testing and screening in adulthood and at a prenatal state is a strong ethical debate of the society. According to Chadwick (1994), there is a difference between genetic testing and screening. Although the two expressions are usually used as synonyms, it is important to clear the confusion in the beginning of analyzing the ethical debate. Screening should only be used for the diseases of “high spontaneous mutation”, and there is no family history indicating that the condition would be present. Testing, however, is applied on large populations to identify risk factors and the purpose is mainly diagnostic.

It is important to review some of the principles of genetic testing created by Wilson and Junger. (1968). The ten principles are as follows:

  1. The condition needs to be an important health problem
  2. There should be treatments available
  3. Treatment and diagnostic facilities need to be available
  4. Testing should be used when there is a latent state of the condition
  5. The condition needs to be well understood and documented
  6. Suitable testing
  7. Testing should be acceptable for those screened or tested
  8. A policy for treatment should exist
  9. The cost of screening and treatment needs to be reviewed
  10. Continuous monitoring

Next, the authors would like to review Fisher’s (2009) ethical principles in the light of the guidelines set by the health care industry and research community, to review whether they comply with the basic requirements and whether there is a gap to be pointed out in the policies.

Avoiding harm for patients being screened and doing good is the first principle of Fisher (2009) Although the Wilson and Junger principles (1968)  mention that there should be sufficient treatment and testing solutions for patients, there are no guidelines for avoiding harm for people, and this is extremely important in the case of genetic screening in the prenatal stage. It is crucial that researchers will develop policies regarding the protection of patients’ health.

Principle B is fulfilled by the guidelines of the industry: fidelity and responsibility. (c, e, j principles) (Wilson and Junger, 1968).

The integrity guidelines of Fisher are not clearly outlined in the genetic screening policies, as it does not mention what type of information needs to be shared and of what extent.

Finally, the respect for people’s lives and dignity, as well as justice (principles D and E) also need to be addressed in order to protect people.

Not addressing the above points when creating policies for testing, screening in adulthood and at prenatal stage can create ethical conflicts and problems. Looking at an example from the research of Smith (2002), points out that the use of information needs to be clearly defined, The author calls for a clear distinction between medical and social use of information during research. Taking into consideration not only the medical but the social risks of screening adults and children can result in the decreased level of equal opportunities, and as such, foster parents can choose to bring up children with better potentials, while those whose screening identified some kind of disorder might be disadvantaged. As the author says: “Genetic information has the power to help or to hinder opportunities for children.” (pp. 57.) Canadian policies regarding patients’ privacy and data protection were created in 1995, (Oscapella, 1995) and the privacy act was successfully implemented regarding consent, information and access. Still, the regulation of private sector is identified as a weak point, as these companies are only obliged to follow their own policies, not governmental recommendations, and the Privacy Act or Charter of Rights do not apply to these firms. (pp. 78.)

References

Chadwick, R. (1999) The Ethics of Genetic Screening. Springer.

De Wert, G. ( 2003) Ethics and Genetics: A Workbook for Practitioners and Students.

Fisher, C. B. (2009). Decoding the Ethics Code (2nd ed). Thousand Oaks, CA: Sage Publication.

Oscapella, L. (1995) Genetic Testing and Privacy. Government Publication. Available:<http://www.priv.gc.ca/information/02_05_11_e.pdf>

Smith, J (2002) “Genetic Testing: A Cautionary Tale of Foster and Pre-Adoptive Children,” New England Journal of Public Policy: Vol. 17: Iss. 2, Article 6.Available at: <http://scholarworks.umb.edu/nejpp/vol17/iss2/6>

Wilson JMG, Jungner G. Principles and practice of screening for disease. Geneva: WHO; 1968. Available from:<http://www.who.int/bulletin/volumes/86/4/07-050112BP.pdf>