The use of Big Data—however the term is defined—involves a wide array of issues and stakeholders, thereby increasing numbers of complex decisions around issues including data acquisition, use, and sharing. Big Data is becoming a significant component of practice in an ever-increasing range of disciplines; however, since it is not a coherent “discipline” itself, specific codes of conduct for Big Data users and researchers do not exist. While many institutions have created, or will create, training opportunities to prepare people to (...) work in and around Big Data, insufficient time, space, and thought have been dedicated to training these people to engage with the ethical, legal, and social issues in this new domain. Since Big Data practitioners come from, and work in, diverse contexts, neither a relevant professional code of conduct nor specific formal ethics training are likely to be readily available. This normative paper describes an approach to conceptualizing ethical reasoning and integrating it into training for Big Data use and research. Our approach is based on a published framework that emphasizes ethical reasoning rather than topical knowledge. We describe the formation of professional community norms from two key disciplines that contribute to the emergent field of Big Data: computer science and statistics. Historical analogies from these professions suggest strategies for introducing trainees and orienting practitioners both to ethical reasoning and to a code of professional conduct itself. We include two semester course syllabi to strengthen our thesis that codes of conduct can be harnessed to support the development of ethical reasoning in, and a sense of professional identity among, Big Data practitioners. (shrink)

The new science of genomics endeavors to chart the genomes of individuals around the world, with the dual goals of understanding the role genetic factors play in human health and solving problems of disease and disability. From the perspective of indigenous peoples and developing countries, the promises and perils of genomic science appear against a backdrop of global health disparity and political vulnerability. These conditions pose a dilemma for many communities when attempting to decide about participating in genomic research or (...) any other biomedical research. Genomic research offers the possibility of improved technologies for managing the acute and chronic diseases that plague their members. Yet, the history of particularly biomedical research among people in indigenous and developing nations offers salient examples of unethical practice, misuse of data, and failed promises. This dilemma creates risks for communities who decide either to participate or not to participate in genomic science research. Some argue that the history of poor scientific practice justifies refusal to join genomic research projects. Others argue that disease poses such great threats to the well-being of people in indigenous communities and developing nations that not participating in genomic research risks irrevocable harm. Thus, some communities particularly among indigenous peoples have declined to participate as subjects in genomic research. At the same time, some communities have begun developing new guidelines, procedures, and practices for engaging with the scientific community that offer opportunities to bridge the gap between genomic science and indigenous and/or developing communities. Four new approaches warrant special attention and further support: consulting with local communities; negotiating the complexities of consent; training members of local communities in science and health care; and training scientists to work with indigenous communities. Implicit is a new definition of “rigorous scientific research,” one that includes both community development and scientific progress as legitimate objectives of genomic research. Innovative translational research is needed to develop practical, mutually acceptable methods for crossing the divide between genomic researchers and indigenous communities. This may mean the difference between success and failure in genomic science, and in improving health for all peoples. (shrink)

The new science of genomics endeavors to chart the genomes of individuals around the world, with the dual goals of understanding the role genetic factors play in human health and solving problems of disease and disability. From the perspective of indigenous peoples and developing countries, the promises and perils of genomic science appear against a backdrop of global health disparity and political vulnerability. These conditions pose a dilemma for many communities when attempting to decide about participating in genomic research or (...) any other biomedical research. Genomic research offers the possibility of improved technologies for managing the acute and chronic diseases that plague their members. Yet, the history of biomedical research among people in indigenous and developing nations offers salient examples of unethical practice, misuse of data and failed promises. This dilemma creates risks for communities who decide either to participate or not to participate in genomic science research. (shrink)

Aboriginal fringe-dwellers in Central Australia emphasize their independence of the white-dominated world around them. Because of differences in their means of support, men and women have developed variations on this perspective of independence and personal power. Men present themselves in terms of their white employers and base their personal collateral on those links. Women stress their ability to care for their families without help from others and present themselves as able to play all social roles in the Central Australian world. (...) This image of woman as universal actor places moral premiums on the protection of domestic interests at the expense of wider gender, ethnic, or class interests. These ideas are explored through analysis of the life story of one woman, Katy Mayhew. Although obtained in an interview setting, the occasion of Katy's story became a life event through which she, her daughter, and her “sisters” reflected upon their lives as Aboriginal women in Central Australia. It is argued that life events are particularly appropriate ways for people to reflect on the meaning of their mundane, everyday lives in contexts such as Aboriginal Australia, which are dominated by bureaucratic frames, processes, and power. (shrink)

The privacy and security rules of the Health Insurance Portability and Accountability Act of 1996 emphasize taking steps for protecting protected health information from unauthorized access and modification. Nonetheless, even organizations highly skilled in data security that comply with regulations and all good practices will suffer and must respond to breaches. This paper reports on a case study in responding to an important breach of the confidentiality and integrity of identifiable patient information of the Kaiser Internet Patient Portal known as. (...) From the perspective of theories about highly reliable organizations, effective health information security programs must respond resiliently to as well as prospectively anticipate security breaches. (shrink)