Opt-in or opt-out? Would you want samples from your body stored in a biobank?

MoJo Musings

Let’s say you had a tumour surgically removed from your bowel. Would you agree to have residual tissue stored in a biobank for use in future research? What if you and your partner produced embryos for In Vitro Fertilisation (IVF)? Would you want those embryos used for other purposes?

Biobanks are a growth industry. Estimates put the number of stored specimens worldwide from 1 to 2 billion and growing. Samples can include blood, saliva, a variety of tissues or extracted DNA.

In a nutshell, these “banks” of human samples can be used for a number of purposes, but the growth areas are in human tissue banking, stem cell banking, the IVF market and clinical trials.

Biobanks face a number of challenges including ethical, regulatory, social, cultural and of course the issues of ownership and access.

Samples are preferably stored with patient case notes including age, ethnicity, medical conditions and any available genetic information of the individual. For example, if researchers want to test a drug treatment for Type 2 diabetes, they will want to know which samples come from people with diabetes and which do not. While case notes make biobank samples more valuable, including this information can raise concerns.

Giesbertz and colleagues examined one important question in a paper published on August 7 2012 in PLOS Biology (open source)1. Should any leftover tissue from clinical procedures be included in biobanks through an opt-in (consent is given for a specific sample to be included) or opt-out process (samples are included automatically unless the individual states otherwise)?

Table 1 from Giesbertz and colleagues1 (below) summarises the positives of both options.

There is no doubt that concerns about biobanking are complex and require extensive interdisciplinary research and public debate. Governments have begun discussing the issues and a Biobank Information Paper from the Australian National Health and Medical Research Council is available2.

References

  1. Giesbertz NAA, Bredenoord AL, van Delden JJM (2012) Inclusion of Residual Tissue in Biobanks: Opt-In or Opt-Out? PLoS Biol 10(8): e1001373. doi:10.1371/journal.pbio.1001373
  2. National Health and Medical Research Council (2012) Biobank Information Paper available for download at http://www.nhmrc.gov.au/your-health/egenetics/health-practitioners

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