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Registry and Biorepository Bulletin
Brought to you by Genetic Alliance Registry & BioBank
27 July 2012 Issue #29


Informed Consent: Broken Contract

In a recent Nature commentary, Erika Check Hayden discusses the 23andMe patent on Parkinson’s disease that used data from several thousand customers, and some customers felt betrayed that their data was used for patenting purposes. Quite often, informed consent does not make research participants very well informed. This is a challenge for individuals developing informed consent forms, as they cannot fully predict how data from participants might be used in the future, or that participant data will remain protected over time. Many participants argue that they should have more control over how their data is used, while researchers are tasked with implementing these increased protections. The disconnect and mistrust between participants and researchers has partially been driven by rapid technological advancement and researchers new ability to identify donors and diseases through genetics. As a solution, Hayden suggests keeping genetic information separate from demographic data, citing Vanderbilt University as an example, but she also acknowledges that Vanderbilt’s “opt-out” informed consent policy has problems. Many researchers promote broad consent as an alternative, but the benefits and risks are still up for debate. The portable legal consent (PLC) is also mentioned as an alternative. (For more information, read Ted Blog’s coverage of the PLC.)

Cell Contamination and Authentication

A Wall Street Journal article, Lab Mistakes Hobble Cancer Studies but Scientists Slow to Take Remedies, highlights that nearly one-third of all human cell lines are thought to be misidentified. A recent article in Biobanking and Biopreservation provides two expert opinions on the state of cell contamination and better steps for authentication. Yvonne Reid, Ph.D., from the American Type Culture Collection (ATCC), suggests that all labs perform STR analysis for cell line authentication, citing ATCC’s 2012 standards indicating a minimum of 8 core markers and 17 short tandem repeats (STR) are needed to uniquely identify a human cell line. STR analysis is accessible, easy to perform, affordable, and robust. Limitations include difficulties in identifying different types of cells (liver cells versus lung cells), that it is human-specific, and it can be difficult to read karyotypes with chromosomal abnormalities such as Down Syndrome (Trisomy 21). Reid suggests that only when scientists and the people funding them take responsibility will the misidentification stop. Joseph Mintzer, from the Coriell Institute for Medical Research also commented on the WSJ article, stating that Coriell has believed in specific identification analysis for years and holds clients accountable for identifying samples prior to analysis.

Public Perceptions of Biobanks

Researchers at St. John’s explored personal privacy and public perceptions surrounding biobanks. The authors used a conjoint analysis method, which assumes that individuals rarely decide on preferences on the basis of a single characteristic, but rather on a bundle of different features, to assess the public’s priorities and preferences. In this study, the characteristics assessed were privacy and confidentiality, the nature of the condition being studied, and who might benefit from the proposed research. The results suggest that biobanks should be thought of as a “public good to be used for the public benefit.” The authors also concluded that specific consent for each new study was generally unwarranted and could potentially skew public perceptions to perceive greater individual risks.

Bioresource Research Impact Factor

As biobanking becomes more prevalent across the globe, the group G2P has introduced the concept of a Bioresource Research Impact Factor (BRIF). BRIF is designed to document the quantitative use of a bioresource, the quality and the importance of research results involving the bioresource, and the scientific and management efforts of the individuals and institutions associated with the bioresource. Utilizing BRIF could increase the quality and sharing of bioresources, and act as a standard to assess the use and sharing of bioresources. Individuals interested in this topic can comment on online discussions or participate in one of five workgroups.


Edited by Nichole Hansen, Liz Horn, and Sharon Terry

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