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Ethical considerations: Genetics

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  • Ethical considerations: Genetics

Genetics: Ethical considerations

After completing this lesson, you should be able to:

  • Discuss ethical considerations of studies of the role of genes in behaviour.
  • Discuss ethical considerations in the use of genetic research and testing.

Please read Ethical considerations: genetics before beginning this section of the module.

Key concepts

Before beginning this module, see if you remember the definition of each of these terms relevant to ethical considerations:
  • Anonymity
  • Attrition
  • Debriefing
  • Deception
  • Informed consent
  • Right to withdraw
  • Stigmatization
  • Undue stress

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Before looking at specific ethical considerations in ethical research, please read the attached article.

Preventing crime

The BBC gives us an example of this through the case of a woman who has a mother dying of Huntington's disease - a neurological disease that leads to disability and death. Watch her story as she struggles with the decision of whether to find out whether she also has the genes - and, therefore, will develop the disease at some time in her life.

Reflecting on ethics and genetics

Based on the article and the video above, what do you think about using genetics as a predictor of behaviour?  What do you see as the benefits and limitations of doing genetic testing for these reasons?

50 lines

 

Research in psychology

So, how does this link to what we have learned so far in this module? Wilhelm et al (2009) carried out a study to see the effects of genetic testing in patients who had the potential to develop clinical depression.  The aim of his research was to see how this information had affected them.

Wilhelm et al (2009)

Wilhelm et al (2009) carried out a study to determine the effect of genetic testing for the 5-HTT gene which is believed to play a role in depression. The researchers asked participants who had received genetic testing to fill out questionnaires.  When asked about the most important benefits of genetic testing, participants said that it allowed for early intervention, provided the potential to prevent the onset of depression, and encouraged them to avoid stressors that might lead to the onset of depression.

When asked to identify the most important limitations of receiving the information, participants said that it could lead to insurance discrimination; lead to discrimination from employers; or make people with the gene variation feel more stressed or depressed.

Regardless of which variation of the 5HTT gene was found, all participants reported more positive feelings than negative feelings.  However, the participants with two short alleles demonstrated significantly higher distress levels after learning their results compared with the other participants.

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Critical thinking about Wilhelm et al (2009)

When you read a short summary of a study like the one above, you should have some questions about information that is not available in the summary, but that may be of importance when interpreting the strengths of the findings.  What questions would have you about this study? 

Generate a list of at least three questions that you think would be important to answer and then click on the hidden box below.

  • What was the average age of people in the sample?   Answer: 50
  • How many people had already been diagnosed or suffered from depression prior to the study?  42%
  • What was the education level of the sample?  Answer: a high percentage were university educated.
  • How was the sample chosen? Answer:  It was a volunteer sample.  Those that took the test did so because they wanted to know. We do not have information from people who did not want to know.

Ethical considerations

For each of the following ethical considerations, make a link to the study of genetics. 

Ethical considerationLink to the study of genes and behaviour
Anonymity
Informed consent
Reporting of information
Psychologists' responsibility for the interpretation of findings
Undue stress or harm
Right to withdraw

Suggested responses

Click below to see suggested responses to the task above.

Anonymity: genetic material should be coded for anonymity so that researchers do not identify an individual in the process of the research. It is important that the genetic information that is collected is not shared with other organizations that could lead to discrimination against individual participants.

Informed consent: It is important, of course, that consent is gained for genetic testing.  Genetic materials should not be collected without the express consent of an individual. The more difficult part is the fact that it needs to be "informed."  Genetics is rather complex (as you are learning), so it means that many people may not understand the implications of their testing. In addition, the results of genetic testing may provide unexpected results that can be troubling for the individual.   In twin research, there are cases - for example, the study by Bailey and Pillard - where the twins were not both interviewed.  In that case, information about the twin was disclosed by the twin in the study. Especially in the case of private information (e.g. mental health, sexuality), this potentially violates ethical standards.

Reporting of information:  When reporting on genetic research, it is important that the researchers do not overstate their findings.  They need to explain the limitations of their research and make implications clear to the reader of their studies. It is important that the research be peer-reviewed and put in place blind controls in order to avoid researcher biases.

Interpretation of findings: Another important ethical consideration in "social activism."  Researchers should make sure that their research is not used to stigmatize a group of people.  If a government is attempting to use a study in order to put in place policies that compromise certain groups, the researchers should clarify their research and advocate for that group.

Undue stress or harm: Finding out that one has a specific gene may lead to undue stress.  It may also lead to a self-fulfilling prophecy where one's expectations lead to the actual mental health problem or behaviour.

Right to withdraw:  Participants in any study have a right to withdraw at any point in the study. This has a major impact on prospective genetic research where people do not want to continue after several years of being studied.

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