deception, respect for persons, consent, stigma, preimplantation diagnosis (PGD), qualitative research, Southeast Asian women
Preimplantation genetic diagnosis (PGD) is a technique in which eggs or embryos are screened, usually for mutations for genetic diseases, to provide parents with information that can support reproductive choices. Even though PGD is not new, its use is limited in some countries because of the cost and other factors. Although the technique provides opportunity to anticipate or prevent certain illnesses and diseases, it also can introduce clinical, ethical, and social challenges. For example, some believe PGD unduly offers parents the ability to choose their future offspring based on desired genetic characteristics.
A social scientist in one Southeast Asian country designed a study to examine maternal perceptions about genetic screening using PGD. The researcher recruited women participants who either already had one or more children with an inherited genetic disease or at risk due to family history. In general, cultural norms in the country do not favor open use of PGD; as such, the researcher was concerned about parents’ willingness to participate in the study. With help from a local nongovernmental organization, the researcher worked with women researchers to approach women attending a support group meeting for those who have children with an inherited disease. These researchers were introduced as counselors to discuss personal struggles experienced by the women. Using a hidden camera and voice recorder, the researchers disguised as counselors collected data for 12 months.
Before conducting the study, the initial researcher submitted a proposal to a research ethics committee for review and approval. The committee members viewed the study as low-risk and approved it, despite some members raising concern about the informed consent process. The committee required that only the research team have access to the videos and voice recordings, that they should be secured in a locked cabinet, and that they should not be published. After conducting the study and analysing the data, the researcher submitted a paper for publication in a peer-reviewed academic journal, obscuring participant identities and details about data collection and storage. A reviewer commented that exclusion of these details may raise questions about reliability of the data. The researcher did not agree.
Questions
What are the risks associated with this stud? What are their natures, magnitudes, and likelihoods of occurrence?
If you were asked to advise the researcher early in their research planning about how to navigate their concerns about cultural norms related to PGD, what advice would you provide?
When might it be ethically acceptable to not disclose one’s research intentions to research subjects? What are your thoughts about the use of deception (i.e., disguising researchers as counselors) in this case?
Is the peer reviewer justified in raising concerns about reliability of the data and requesting information about the participants and data collection practices?
If you were member of the research ethics committee, would you approve this study? Why or why not?
