Collecting biospecimens for research from your community is a long-term commitment. It requires earning and keeping their trust by being as transparent as possible. It requires following the highest ethical, regulatory and legal standards.And it should include a mechanism for providing feedback to the community on the research that has been done using their samples. In some cases, there may be risks to ethnic and social groups or communities due to the release of aggregate research findings even when no individually identifiable information has been revealed. In addition, some populations or groups have specific beliefs about the disposition and use of their specimens, which should be respected.

Best Practice: When research focuses on a particular community it is best to seek input from representatives of the group on relevant aspects of the design of the study, the consent process, appropriate uses of specimens and dissemination of collective research findings.

We provide the following templates:

• informed consent to collect biospecimens during pregnancy

• participant information sheet

Below are some links to excellent sites providing more discussion on the ethical issues of collecting human tissues for research purposes:

http://www.malariagen.net/community/ethics-governance

http://www.ethox.org.uk/

http://globalhealthbioethics.tghn.org/

 Here is a link to an interesting perspective: formal comments from the National Congress of American Indians regarding the collection of biospecimens from nativeamericans. These formal comments were in response to the lawsuit the Havasupai Tribe filed against the Arizona State University, charging the misuse of blood samples taken for a study on the genetics of diabetes.

 http://www.ncvhs.hhs.gov/120417p9.pdf

This article was orginally posted on the Mother Child Link site, where more resources relating to mother, neonate and child health can be found.