Informed consent, genomic research and mental health: A integrative review.

BACKGROUND

Research on genomics has increased while the biobank activities are becoming more common in different countries. In the mental health field, the questions concerning the potential participants' vulnerability as well as capacity to give the informed consent can cause reluctancy in recruiting persons with mental health problems, although the knowledge and understanding of mental health problems has remarkable changed, and practice is guided with inclusive approaches, such as recovery approach.

AIM

The aim of this study was to describe the current knowledge of informed consent practices in the context of genomic research on mental health from the nurses' viewpoint.

METHODS

An integrative review was conducted with search from seven international databases. Data consist 14 publications which were analyzed with thematic analysis.

ETHICAL CONSIDERATIONS

Ethical requirements were respected in every phase of the research process.

FINDINGS

Most of the papers were published in USA and between 2000-2010. Eight reports were categorized as discussion papers, four qualitative studies and one quantitative study. The thematic analysis provided information on five themes: complexity with the capacity to consent, mixed emotions towards participation, factors influencing the decision to participate, nurses' informed consent process competence and variations between consent procedures.

DISCUSSION

In the informed consent practices, there are various aspects which may affect both the willingness to participate in the study and the informed consent process itself. Implications for practice, education, research, and policies are discussed.

CONCLUSION

There is a need for more updated international research on the topic in the context of different international and national guidelines, legislation, and directives. This study provided a viewpoint to the more collaborative research activities with people with lived experiences also in this field of research following the ideas of recovery approach.