Hello Lezelle

I have not had to access this form of consent, but wondered if you had seen these papers and whether they would be of help you decide how to progress:

Lunshof, J. E., Chadwick, R., Vorhaus, D. B., & Church, G. M. (2008). From genetic privacy to open consent. Nature Reviews Genetics, 9(5), 406-411.

http://www.researchgate.net/publication/5472234

I had a quick look at the authors' publication pages on ResearchGate; you might find it helpful to look at other publications that they have had. I think these 2 of the 3 authors have written more on the genetics/ ethics side:

https://www.researchgate.net/profile/Jeantine_Lunshof/publications

https://www.researchgate.net/profile/Ruth_Chadwick/publications 

These authors referenced the above paper:

Mascalzoni, D., Hicks, A., Pramstaller, P., & Wjst, M. (2008). Informed consent in the genomics era. PLoS Med, 5(9), e192.

http://www.researchgate.net/publication/23264546

This is another paper that may be useful for your project:

Ponder, M., Statham, H., Hallowell, N., Moon, J. A., Richards, M., & Raymond, F. L. (2008). Genetic research on rare familial disorders: consent and the blurred boundaries between clinical service and research. Journal of medical ethics, 34(9), 690-694.

http://www.researchgate.net/publication/23223999

I hope this helps; I'm not sure whether I have answered your question.

Very best wishes with your project,

Mary

Article From Genetic Privacy to Open Consent

Article Genetic research on rare familial disorders: Consent and the...

Article Informed Consent in the Genomics Era

Hi Mary

Thank you so much! this is my first research project so I am a bit nervous and overwhelmed. However i am very interested in the topic so the articles you have provided will guide me futher! There is much to learn from experienced researchers such as yourself so thank you for sharing.

Hi Lezelle.  I haven't done any work on testing informed consent through surveys.  I have, however, extensive experience as a health advocate looking at informed consent from patients' perspectives.  

I am not sure how you intend to assess understanding.  If you want to assess what people have learnt about certain concepts (e.g. the risk of injury from a procedure, the range of options available to the patient), then some form of questionnaire asking question about the concepts may work quite well. Such an approach assumes you know the 'correct answers.'

If you want to assess the nature of patients' understanding of the issues a questionnaire may not be helpful.  First, it is limited to the questions you think of asking, which may or may not match their experiences.  Second, it assumes language proficiency that may or may not apply.  Third, what people SAY in a survey does not necessarily reflect their concerns or issues. Fourth, there is a lot of self-presentation in questionnaires about deeply personal issues.

I'd suggest using one or more elicitation techniques.  Possibly TAT.  See the attached paper for an example.  Other useful techniques include vignettes

Jenkins, N, Bloor, M, Fischer, JAN, Berney, LEE & Neale, J 2010, 'Putting it in context: the use of vignettes in qualitative interviewing', Qualitative Research, vol. 10, no. 2, pp. 175-98.

Conference Paper Understanding the subjective: eliciting hidden meaning