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Topic: Biobanking
February 26, 2015 | Posted By Zubin Master, PhD

In the past State of the Union address, Obama announced his precision medicine initiative involving the creation of a new, national level biobank.

Biobanks collect biological samples (e.g., DNA, cells, tissues, blood) and health and lifestyle information (e.g., disease information, smoking habits). By collecting it once, biobanks store biosamples and information such that they can be used as new biomarkers are discovered. As the samples are shared with others, biobanking research offers a novel research platform to perform large-scale, epidemiological studies in order to associate genotypic or biological information with healthand disease. Many nations have made significant investments into biobanking research creating national level biobanks such as the U.K. Biobank, which has half a million samples, and the Icelandic biobank called deCode Genetics.

Obama’s goal is to have at least 1 million American volunteers enroll in the biobank which will aim to conduct longitudinal studies examining genes, health and the environment. Collecting these many samples may not be so straightforward concluded a panel of experts at a recent workshop at the National Institutes of Health. Several scientific and logistical issues were discussed. What types of diseases will be studied? Who will have access to the data? Who will be recruited? Will samples from other biobanks be incorporated into the precision medicine initiative? Yet with the many scientific and logistical issues, there are numerous ethical issues including informed consent, commercialization, and the return of results that must be given due consideration.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website. 

April 25, 2013 | Posted By Zubin Master, PhD

Several scholars claim that hyping different biotechnologies will lead to a loss of public trust which in turn will result in a loss of support for science. This has been discussed in the context of genomics research, gene therapy, stem cell research, biobanking, neuroimaging research, and nanotechnology. The problem most articulate is that hype in terms of promising medical benefits to the public will generate an expectation by the public and when such expectations are unmet, the public’s support for science will wane. Certainly there is social science evidence to support that (a) hype over many biotechnologies is present in the popular media and (b) several actors are involved in hyping science including scientists, media, politicians, and others. And while the idea that hype and unmet expectations could result in a loss of public trust and support for science seems logical and to some degree intuitive, I think the reality is that the relationship between hype, public trust, and the loss of support for science is quite complex. It is also complicated to measure empirically and to date, there is no study I have come across that demonstrates this relationship. In fact, the one study evaluating the public and donor’s perceptions on hype and stem cell research actually shows that people “aren’t taken in by media hype.”

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

February 8, 2013 | Posted By John Kaplan, PhD

Anonymity has always been an important component of protecting the privacy of human participants in research and other activities including biobanking. In his January 21, 2013 post to this blog, my colleague Zubin Master asked the question “could it be possible to identify people who have participated in biobanking projects?”  We did not have to wait very long for an answer. It turns out that the January 18, 2013 issue of Science was already on my desk.  In a study in that issue, Melissa Gyrmek and colleagues in a group led by Yaniv Ehlich describe how they used a published genetic sequence as well as accompanying metadata and freely accessible genealogy websites to identify the sequence’s owner. This was big enough news to merit a news article and a policy forum examining the ethical implications all in one issue.

A previous study (Science, September 5, 2008 p1278) had allowed donor identification from a blood sample through analysis of single nucleotide polymorphisms by sequencing a blood sample. This new study is the first to use simply a published sequence.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

January 21, 2013 | Posted By Zubin Master, PhD

Biobanking involves the collection and long-term storage of biological material (e.g., cells, DNA, tissue, blood) and health information (medical history, age, weight, diet, lifestyle). Biobanking permits the examination of genetic and other biological markers on thousands of samples at a time in a given population. Thus, there has been a tremendous amount of interest by scientists, clinicians, and even bioethicists on biobanking. It has been touted as the next frontier expanding on the work done with genomics and proteomics. The value of biobanking research is that although the samples and health information are collected at some point and stored, they can be used for future research when new biomarkers are discovered. Many if not most bioethicists have explained that biobanking risks are pretty low. Risks surrounding privacy can be protected so long as proper measures are in place. As sample collection involves a blood draw or collecting tissue as part of routine care, there is also low risk of physical harm to participants. Because of the scientific and social value of biobanking and its potential minimal harms to participants, many scholars have explained that a broad or blanket informed consent procedure is suitable. According to biobanking advocates, broad consent (consent to certain broad categories of research i.e., cardiovascular or cancer research) or blanket consent (consent to all research or any medical research) is both ethically and legally permissible because re-consenting to each and every future study is resource intensive and burdensome, and there is little harms to participants and privacy risks can be protected. So what’s the problem?

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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