Hello everyone!

Your first thought may be how are genetics relevant to Psychology/research methods?

Psychology expands beyond just lab experiments, and includes; lesion studies, drug trials, animal studies and much more. Genetics underpin human biology and in recent years genetic research has been looking at the heritability of behavioural and cognitive attributes such as intelligence and personality. I also feel that this matter is hugely relevant with the recent changes in confidentiality policy regarding medical files(http://www.bbc.co.uk/news/uk-16026827)

Let’s start with what many consider to be the primary ethical consideration, Non-Maleficence(protecting participants from harm). Usually in psychological research we primarily focus on potential harm of the experiment itself, however in genetics there is a great deal of concern over the potential harm of results. Whether results should be revealed to participants is a controversial subject,and despite extensive debate there is still no consensus (Holtzman and Watson, 1997: Bredenoord et al, 2011). Nevertheless it is generally agreed that if results are disclosed, then appropriate counselling provisions should be in place to ensure results are interpreted correctly. Imagine for example, an experiment found that men had increased risk to a certain disease. This could lead to male participants to believe that they will inherit this disease(when in reality it’s only a slight increased risk) and a result experience stress or upset.

Researchers are also wary about how their results could stigmatize certain groups (MacKay, 1993).
A famous example of this would be the hugely controversial book “The Bell curve”. The authors in this book made an argument for a strong genetic link between race, intelligence and criminal behaviour. Critics of the book suggest that authors greatly exaggerated role of genetics in intelligence and perpetuated beliefs that are stigmatising and damaging to the public image of certain groups.

Another key ethical consideration is confidentiality. Genetic data alike psychological data is often anonymous, in which the identifying data relating to the sample is destroyed. Though this provides anonymity for the participant, it also make it difficult for the participant to withdraw their sample. This is particularly problematic because data is often stored for future experimentation, and possibly even passed onto third parties (Clayton et al., 1995). Others have also raised the relevant point about whether genetic data can ever be truly anonymous, in that each person’s genetic data is unique and can be used as a identifier in legal and criminal proceedings.

However, anonymous data is only one aspect of confidentiality. While researching for this blog the definitions I came across took a more rudimentary approach of discussing the principles at the heart of confidentiality. These definitions focus on the idea that the participant maintains, “control over the extent, timing, and circumstances of sharing oneself”. (McCabe, 2004). As we’ve covered this means not disclosing their data without their consent, but also giving them control as to what information they choose to disclose in the experiment. This is often very straightforward in psychological testing, in an interview for example the participant can choose to not answering a question, they may even withdraw from the experiment. This however is not quite so simple with genetic data, when you hand over a sample researchers will not always make clear what tests they intend to carry out or what information will be obtained. Genetic data is unique to you and can reveal highly personal information such as genetic predispositions and even family histories of illness (MacKay, 1993). This creates a highly complex ethical situation, Should researchers require consent from the family?

As you can see consent can become an extremely complex matter. As we’ve established there are times when consent cannot be gained (anonymous data), in other cases consent it’s not needed (the person who provided the sample has died). Which raises the question; do we all ways need consent?

As is often the case, ethics debates will ultimately be brought down to the question of “Do the ends justify the means?”. Is it acceptable to breach certain ethical guidelines if the potential benefits are great? In this case we have to ask what potential benefits could be achieved? A famous example which demonstrates this is the case of Henrietta Lacks. Cells were taken from her tumour during a biopsy, these cells have since been used to develop a cure for polio which has saved countless lives. However there is no record that researchers ever obtained her consent. Is this justified? To answers this question we have ask the question.. What are the consequences of using such means? Sadly there are few, if any answers to this question.(Mackay, 1993) expresses concerns that if participants data is not properly protected that individuals could face discrimination. However this is speculation, and the full extent of the consequences are not known, which makes reaching a definitive answer very difficult.

In conclusions as we’ve seen previous debates ethics is dubious territory and that remains the case with genetics. (Bredenoord et al, 2011) concluded that despite extensive debate there remains little consensus on ethics in genetic research. Hopefully this blog has offered you an interesting insight into some of the considerations in genetic ethics and provided a new perspective on ethics as a whole.

Citations:

Bredenoord et al(2011) Disclosure of individual genetic data to research participants: the debate reconsidered.http://www.sciencedirect.com/science/article/pii/S0168952510002271

Clayton et al. (1995) Informed consent for genetic research on stored tissue samples. –
http://jama.ama-assn.org/content/274/22/1786.short

Holtzman &Watson (1997) Promoting safe and effective genetic testing in the United States: Principles and Recommendations. – http://www.clinchem.org/content/45/5/732.abstract

MacKay CM (1993) Discussion points to consider in research related to the human genome. –

http://online.liebertpub.com/doi/abs/10.1089/hum.1993.4.4-477

McCabe (2004) Comment from the Conflicts of Interest, Privacy/Confidentiality, and Tissue Repositories. –

Police DNA Database Links:
http://campaigns.libdems.org.uk/dna

http://www.telegraph.co.uk/news/uknews/law-and-order/5865491/Hundreds-of-innocent-people-added-to-DNA-database-each-day-despite-unlawful-ruling.html


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