The ethics weathervane

Abstract

BackgroundGlobal collaboration in genomic research is increasingly both a scientific reality and an ethical imperative. This past decade has witnessed the emergence of six new, interconnected areas of ethical consensus and emphasis for policy in genomics: governance, security, empowerment, transparency, the right not to know, and globalization.DiscussionThe globalization of genomic research warrants an approach to governance policies grounded in human rights.SummaryA human rights approach activates the ethical principles underpinning genomic research. It lends force to the right of all citizens to benefit from scientific progress, and to the right of all scientists to be recognized for their contributions.

Human Genetics and Genomics in South Africa: Ethical, Legal and Social Implications

“…A limitation of the once-off informed consent form is that researchers must anticipate all eventualities. By acting with consent, researchers can code research participants' data out of respect for these individuals (Knoppers and Chadwick, 2015). The emergence of biobanks attests to the impracticalities of obtaining individual consent from participants for every exact future use of stored data and samples.…”

“…The internet and social media have changed the landscape of privacy and confidentiality of personal data. Today, empowerment of individuals goes beyond strategies for including the public (Knoppers and Chadwick, 2015). The mechanisms of public engagement have undergone a series of transformations, and within the dimension of citizenry, patients/participants network to make research their own.…”

Data Safe Havens and Trust: Toward a Common Understanding of Trusted Research Platforms for Governing Secure and Ethical Health Research

“…This must be coupled with discoveries that research participants are expecting greater transparency about [ 26 ] and a “louder voice” in how research is conducted [ 27 ]. The dilemma is clearly one that straddles both ethical and legal requirements and requires balancing the rights of the individual—particularly around autonomy—and the rights of the wider citizenry to benefit from scientific progress [ 5 ].…”

“…The criteria also relate to maintaining the security of the data, specifically around the preservation of confidentiality, integrity, and availability of the data, and appropriate and secure access to identifying data and their protection [ 4 ]. Knoppers and Chadwick conclude that “[c]lear systems of governance, public trust in data security, personal empowerment and the responsibility it brings re ‘knowing’ (or not) as well as transparency of research outcomes are to be welcomed...” [ 5 ]. They have further developed an understanding of the ethics involved in this area and expanded the scope of “trustworthiness” to include the public and its views on the security of safe havens.…”

“…This paradigm is a commonly recognized, state-of-the-art approach for handling information derived from health care records in clinical research, which has also achieved international recognition. While the paradigm has developed to include a set of 12 criteria, including the need to take account of societal concerns and anxieties when handling data within any environment that claims to be a safe haven [ 4 ], there remains work to be done to develop a more inclusive definition of trustworthiness in this context, specifically with regard to the public and its views on security [ 5 ]. But what does the paradigm look like in practice and how does it measure up against developing dilemmas and challenges in the age of big data?…”