IB Docs (2) Team
Ethical considerations: genetics
Research in human genetics aims to identify particular genes involved in human behaviour. This kind of research may pose risks to participants because of the link between genetic inheritance and the potential for how people live their lives. Genetic information obtained from such research can also be problematic for the participant’s family. If misused, genetic information can be stigmatizing and may affect people’s ability to get jobs or insurance.
In any study, participants should always know how their privacy and confidentiality will be protected, and what will happen to any genetic material or information obtained as part of the study.
In addition, the aims and procedure of the study must be explained in plain language and participants must sign an informed consent paper to show that they have a clear understanding of the study they are participating in, and the implications, including any potential harm.
Confidentiality and privacy can be protected by coding information (where a code is assigned and only a small number of researchers have access to the codes) or by fully anonymizing the sample (where researchers cannot link samples or information to particular people). Anonymization protects confidentiality from insurance companies, employers, police, and others, but it also can limit the scientific value of the study by preventing follow-up and further investigation.
Genetic research can reveal unexpected information that may result in undue stress or harm to the research participants. Examples include evidence of misattributed paternity or unrevealed adoptions within a family. Another example occurs when a person discovers from the study that he or she carries the gene for a particular genetic disorder. This may cause undue stress as the participant then fears the potential onset of the disorder.
Research in psychology: 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. In this study, the researchers followed up by asking 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 helped people with the gene variation to avoid stressors that made to the onset of depression.
When asked to identify the most important limitations of receiving some information, participants said that it could: lead to insurance discrimination; lead to discrimination from employers; 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 result compared with the other participants.
The study gives us some insight into the ethical considerations of genetic testing. However, the study has some limitations. First, the sample had a mean age of 50 years old. 42% of the participants had suffered from depression during their lifetime – and those that had not had little chance of starting at such a late age. In addition, the sample was highly educated. The sample is also made up of those that had agreed to have the testing in the first place. Obviously, it is not possible to know the effect on those that refused to have the testing.
In order for this to be a more informative study, it would have been better to have the testing done before the participants were ever diagnosed with depression – in other words, a prospective study. However, this raises other ethical concerns, especially if genetic testing is done on children. Genetic testing could lead to a self-fulfilling prophecy, where people develop symptoms due to the expectation that they will get the disorder. However, there is no evidence yet that this is, in fact, the case. There is also a concern that genetic testing in children could change the parent-child relationship, with parents becoming overly protective of their child or disengaging from the child as a result of the test results.
A self-fulfilling prophecy is when a person unknowingly causes a prediction to come true, due to the simple fact that he or she expects it to come true.
Finally, the question of “genetic determinism” is an ethical concern in genetic testing. It is important that those that receive genetic testing do not believe that their genetic make-up is their “destiny.” It is possible that with effective counseling after test results are made available, that people will understand that they are not passive victims to their genetic code, but that they can take specific actions – such as stress reduction, exercise, and changes to diet – that may help them to prevent the development of such disorders.
ATL: Thinking critically
Christiansen (1977) carried out a study of 3586 sets of Danish twins and found a higher concordance rate for MZ twins than for DZ twins or siblings. More modern research indicates that a mutation in the neurotransmitter-metabolizing enzyme monoamine oxidase A (MAO-A) leads to a syndrome that includes violence and impulsivity in humans.
If there is a biological marker for criminal behaviour, it might be possible to prevent crime more effectively. By predicting which children have the potential to be trouble, treatments could be introduced and the lives and property of others could be protected.
Based on what you know about genetic inheritance, do you believe that this would be a good approach to fighting crime?
Checking for understanding
Which of the following is an example of stigmatization?
Which of the following is not an ethical concern in genetic research?
It is often difficult for the average person to understand genetic research and its implications; therefore, it is questionable whether informed consent can really be obtained. Data needs to be anonymous because it could have an effect on different aspects of the life of the participant - including insurance or employment opportunities. There is always the potential for undue stress or harm, especially if information obtained indicates potential health problems.
What was the key finding of Wilhelm et al's (2009) study on participant attitudes toward genetic testing?
Which terms describes what potentially might happen when you get a genetic test result that says that you have a gene related to depression and then you begin to show the symptoms?
All four of these terms are related. Reactivity is when a person changes their behaviour because they are being observed. The individual may demonstrate "symptoms" that are then incorrectly diagnosed by a psychiatrist. Medical student sydrome is what happens when people do research on disorders and then start to self-diagnose, believing that they have it. And the placebo effect is when your behaviour changes because you are receiving "a treatment", even if that treatment is not valid.
Which of the following statements is not true regarding genetic inheritance?
Although in some ways genetics is destiny, it is important to remember that it is all about gene expression. Psychologists believe that by regulating stress, diet and excercise, we are more likely to live a healthier life, even if we have genes which potentially could be harmful.
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