Biobank Donors as Active Participants: A New Biobanking Model

Most of the literature on dealing with biobank donors centers on the ethics of collecting, storing and using samples. Informed consent, re-consent, anonymization and disclosure of results are all hot topics, with local and national organizations spending considerable effort on ensuring that biobank management pays proper care and attention to donor treatment. Furthermore, the role of patients in biobanking is evolving, moving from passive donor to active participant, as noted by Mitchell et al. (2015).¹

But what about the period before a person becomes a donor? Although a sense of altruism spurs some individuals in the general population into giving samples, in the case of disease-specific biobanks there may not be a wider community to draw from. Although patients with the disease are a natural choice for biosample collection and are often motivated to assist in this manner, recruiting them at what might be a sensitive moment in life requires tact and professionalism.

Furthermore, in order to establish normal controls, disease-specific biobanks must also collect samples from those who may be currently unaffected but at increased risk compared to the general population. Recruiting these donors may be a stark reminder to them of impending mortality or a life of medical interventions ahead. In addition to this jolt of reality, there is also the very real concern of stigmatization if the wider community learns of involvement. In certain cases, this could lead to ostracism as well as disadvantaging an individual with regard to personal insurance, career and other life choices. Many potential donors may simply not wish to be identified as belonging to the population of interest.

So how should biobanks approach potential donors under these sensitive circumstances?

According to O’Doherty et al. (2012), a four-day deliberative process conducted among a representative population sample on the ethics of identifying and contacting potential donors for a disease-specific biobank identified key pointers for successful recruitment.² Participants believed that there could be problems identifying and contacting potential donors unless handled sensitively. For both prospective and retrospective (following pathology laboratory investigations) biosample collection, they thought that initial contact should be made via the patient’s own family doctor to allay concerns over confidentiality and privacy issues with another party knowing medical details. Moreover, since the panels felt that the timing of the request could influence potential donors, establishing initial contact through the primary care provider might avoid dropping the biobanking bombshell while a patient is in a vulnerable or distressed state.

Furthermore, as suggested by Mitchell et al., since donors are increasingly seen as stakeholders, it makes sense to follow on from the current patient-centered approach to health care when implementing biobanking strategies. By drawing on user experience and input, even in the planning stages, biobankers might help build service delivery that supports donors.

Perhaps with this in mind, a recent study by Patterson et al. (2015) sought to understand donor concerns when giving samples for HIV research.³ Every three years, the Gay Men’s Sexual Health survey takes place in Scotland, with participants answering a questionnaire. The survey now includes saliva samples for measuring HIV antibodies. Although saliva samples are linked to the questionnaire, there is no link to the individual donor; thus, HIV status is used only to show prevalence, and results are not reported back to the individual. Patterson et al. posited that by learning more about the perceptions of these donors for disease-based biobanking, researchers could increase participation and donation in future.

To gather this information, the researchers interviewed gay and bisexual men recruited at commercial gay scene venues in two Scottish cities, Edinburgh and Glasgow. Following consent, researchers contacted the men by phone, using semi-structured interviews to gather information on issues concerning biosample collection for ongoing HIV research.

The research team transcribed the interviews verbatim and anonymized the transcripts, examining responses according to the following subject areas:

Informed consent
Anonymity and confidentiality
Rights of ownership and withdrawal of samples
Destruction/re-use of biosamples
Sensitivity to donating different types of biosample

Among other views, interviewees expressed concerns with potential privacy and confidentiality breaches arising from donated biosamples if they could be tracked back to the donor. Opinions varied on ownership once a sample had been donated; this was reflected in thoughts on re-consent and re-use, with advancing medical science seen as a more positive outcome than developing commercial interests.

Interestingly, sensitivity to donating different types of biosample also reflected a sense of ownership. Although the men classed the more invasive samples (blood, bowel tissue) alongside semen and urine as sensitive to collect, some noted that the presence of DNA acting as a marker of identity denoted ownership. Possibly in reaction to this, most saw that donating saliva as a biosample would be less likely to cause discomfort. Patterson et al. further commented that this sensitivity might vary according to the disease being studied, where there is a connection between the biosample itself and the route of pathogen transmission.

Mitchell et al. suggest that since the role of the donor is evolving into more active participation, biobanks should engage with potential donors as early as possible. The study reported by Patterson et al. and the deliberative process described by O’Doherty et al. are first steps in finding out what donors need before they indeed become donors. This could be especially important when the study population comprises vulnerable and disadvantaged members of society.Seeing donors as partners and collaborators in the early biobanking process could increase biosample collection and retention, a vital and valuable feature of biobanking’s ongoing role in the development of personalized medicine.

References

1. Mitchell, D., et al. (2015) “Biobanking from the patient perspective,” Research Involvement and Engagement, 1(4), doi: 10.1186/s40900-015-0001-z.

2. O’Doherty, K., et al. (2012) “Managing the introduction of biobanks to potential participants: Lessons from a deliberative public forum,” Biopreservation and Biobanking, 10, doi: 10.1089/bio.2011.0029.

3. Patterson, C., et al. (2015) “Gay and bisexual men’s perceptions of the donation and use of human biological samples for research: A qualitative study,” Public Library of Science PLoS ONE, 10(6): e0129924, doi:10.1371/journal.pone.0129924.

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