Ethics and biobanks

Hansson, Mats

doi:10.1038/sj.bjc.6604795

Cited by 156 publications

(90 citation statements)

References 28 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…These results suggest that while many legal and ethical scholars might believe there to be a consensus around the use of general or broad consent for biobanking, [31][32][33] this sample of scientists expressed a different opinion. Many of our participants mentioned that their views were based on their experience with informed consent and from working with many stakeholders including patients/donors, patient advocacy groups, ethics boards and funders.…”

Section: Resultsmentioning

confidence: 96%

Scientists’ perspectives on consent in the context of biobanking research

2014

View full text Add to dashboard Cite

Most bioethics studies have focused on capturing the views of patients and the general public on research ethics issues related to informed consent for biobanking and only a handful of studies have examined the perceptions of scientists. Capturing the opinions of scientists is important because they are intimately involved with biobanks as collectors and users of samples and health information. In this study, we performed interviews with scientists followed by qualitative analysis to capture the diversity of perspectives on informed consent. We found that the majority of scientists in our study reported their preference for a general consent approach although they do not believe there to be a consensus on consent type. Despite their overall desire for a general consent model, many reported several concerns including donors needing some form of assurance that nothing unethical will be done with their samples and information. Finally, scientists reported mixed opinions about incorporating exclusion clauses in informed consent as a means of limiting some types of contentious research as a mechanism to assure donors that their samples and information are being handled appropriately. This study is one of the first to capture the views of scientists on informed consent in biobanking. Future studies should attempt to generalize findings on the perspectives of different scientists on informed consent for biobanking.

show abstract

Section: Resultsmentioning

confidence: 96%

Scientists’ perspectives on consent in the context of biobanking research

2014

View full text Add to dashboard Cite

show abstract

“…It is employed in the main studies with this design and represents new ethical and legal challenges. 5,6,12 In the ELSA-Brasil, the storage of genetic and cellular material, enabling access to DNA codes and to expression patterns of RNA and proteins, will allow testing associations between cellular and molecular alterations that precede the emergence of a series of diseases. New science fi elds that have just started to develop, called genomics and proteomics, will enable, in a future that is not so distant, a better prediction of chronic diseases that constitute public health problems in many countries, including Brazil.…”

Section: Continuementioning

confidence: 99%

Aspectos eticos em estudos longitudinais: o caso do ELSA-Brasil

et al. 2013

View full text Add to dashboard Cite

The debate about ethics in research with human beings has historically emphasized experimental studies because of their greater potential to harm the subjects involved. However, observational studies also include risks and relevant questions to be discussed. This article aims to present and discuss the ethical aspects involved in the implementation of ELSA-Brasil (Brazilian Longitudinal Study for Adult Health), a longitudinal multicenter study, with public funding, in which the research subjects and investigators are employees of the same institutions. The procedures adopted to meet the ethical requirements and commitments are described, as well as the casuistics that guided the actions according to their guiding principles (benefi cence, autonomy and social justice). We present some moral problems that required consideration of risks and benefi ts at the confl uence with the study's objectives, and we conclude with comments on the peculiarities and the potential benefi ts of a longitudinal study.

show abstract

“…[16][17][18] In summary, the information about the specific aim of the research, about its risks and benefits, as well as the information about disclosure of incidental findings during the informed consent process, constitute a specific challenge in biobank-based genomic research. 3,9,12,[17][18][19][20] The success of biobank-based genomic research is widely dependent on people's willingness to donate their tissue or blood samples and their trust in research and responsible handling of the ethical issues. Therefore, it is necessary that the opinion of patients who donate tissue for disease-specific research or of the public involved in population-based studies are considered in the development of best practice guidelines for professionals involved in research and recruiting participants.…”

mentioning

confidence: 99%

Stakeholders’ perspectives on biobank-based genomic research: systematic review of the literature

et al. 2015

View full text Add to dashboard Cite

The success of biobank-based genomic research is widely dependent on people's willingness to donate their tissue. Thus, stakeholders' opinions should be considered in the development of best practice guidelines for research and recruiting participants. We systematically analyzed the empirical literature describing different stakeholders' views towards ethical questions with regard to type of consent, data sharing and return of incidental findings. Patients are more open to one-time general consent than the public. Only a small proportion desires recontact if the research aim changed. A broad consent model would prevent only a small proportion of patients from participating in research. Although professionals are concerned about a risk of reidentification, patients and the public support data sharing and find that the benefit of research outweighs the potential risk of reidentification. However, they desire detailed information about the privacy protection measures. Regarding the return of incidental findings, the public and professionals focus on clinically actionable results, whereas patients are interested in receiving as much information as possible. For professionals, concrete guidelines that help managing the return of incidental findings should be warranted. For this it would be helpful addressing the different categories -actionable, untreatable and inheritable diseases -upfront with patients and public. European Journal of Human Genetics (2015Genetics ( ) 23, 1607Genetics ( -1614 doi:10.1038/ejhg.2015; published online 4 March 2015 INTRODUCTIONTechnical advances in whole-genome sequencing enable the identification of genomic variations involved in the development of diseases, such as acquired mutations that are causally linked to cancer. 1,2 Improvements in disease prevention as well as diagnostic and therapeutic strategies may eventually lead to more precise, individually stratified health care. As most diseases are complex, which means that they are caused by multiple genomic factors, research is often based on large numbers of samples representing large numbers of individuals to arrive at statistically significant conclusions. In addition, genetic susceptibility alone is not sufficient to induce a complex disease; the causes also include different lifestyle and environmental factors. Therefore, to study complex diseases the interplay of all of these factors has to be considered. An efficient tool to achieve this is the creation of biobanks. Biobanks are defined as organized collections of human biological specimens comprised of cells, tissues, blood or DNA, which could be linked to clinical data and detailed individual lifestyle. Biobanks vary with respect to types and sources of samples and size, as well as research focus. Biobanks can be disease-specific or population-based, ranging from small collections to large-scale repositories. [3][4][5][6][7] Linking biological materials to personal data for enabling biobankbased genomic research raises several ethical questions that are currently debated. Th...

show abstract

Ethics and biobanks

Cited by 156 publications

References 28 publications

Scientists’ perspectives on consent in the context of biobanking research

Scientists’ perspectives on consent in the context of biobanking research

Aspectos eticos em estudos longitudinais: o caso do ELSA-Brasil

Stakeholders’ perspectives on biobank-based genomic research: systematic review of the literature

Contact Info

Product

Resources

About