Biological Anthropology and Ethics: From Repatriation to Genetic Identity

Chapter 20. Commentary: Data Sharing and Access to Information

281 Chapter 20 Commentary: Data Sharing and Access to Information Trudy R. Turner The U.S. Office of Management and Budget stipulates in Circular A-110 that data obtained through grants awarded by federal agencies such as National Science Foundation and National Institute of Health are public and may be obtained through the Freedom of Information Act. NSF, NIH, and other federal agencies encourage the rapid and broad dissemination of research data throughout the scientific community. This reflects a scientific ideal of a community of scholars producing and sharing information. Sharing data promotes “open scientific inquiry, encourages diversity of analysis and opinion, promotes new research, makes possible the testing of new or alternative hypotheses and methods of analysis, supports studies on data collection methods and measurement, facilitates the education of new researchers, enables the exploration of topics not envisioned by the initial investigators, and permits the creation of new datasets when data from multiple sources are combined.” (http:/ /grants2.nih.gov/grants/policy/data_sharing/data_sharing_guidance.htm#goals) The application of this ideal to real situations, however, is anything but clear and easy. The timely sharing of information is one of the issues that is important in a multitude of scientific disciplines. Many disciplines are currently wrestling with the ways to establish real time data sharing plans (see for example Lindstrom & Briscoe, 1999, which proposes a new model for data sharing among oceanographers). This issue, as well as others that concern nonreproducibility of basic data, are particularly relevant for biological anthropologists. Much of the data of biological anthropologists are unique. There may only be a single representative fossil. Even if a researcher obtains full funding and support for a lengthy field expedition, a second representative fossil may not be available. Obtaining a second blood sample may not be possible if animals are wild and/or endangered. Consent and confidentiality are particu- 282 Trudy R. Turner larly important when attempting to replicate a study or work on samples from human populations that were obtained for a different research project. In this commentary I raise some of the questions that our discipline confronts concerning data sharing without providing specific answers. These questions exist on many levels—legal, ethical, and international. We hope answers will emerge with continued dialogue. Some of the questions we must address include: What exactly are the data that become public information ? The Federal Register provides a definition of data that applies in the circumstance of federally funded research, however, it is not the only available definition of data. What is fair use for the person who originally obtained the data? There may be patentable products that may alter a timetable for sharing of information. What if information is obtained from individuals who were guaranteed confidentiality? How are the data to be made available to everyone?1 Some of the chapters in this volume have specifically addressed aspects of the sharing of data. The chapter by Monge and Mann is concerned with maintaining access to fossil resources through appropriate casting techniques. Lehn discusses a new resource for providing access to rare primate genetic materials. Much of the work discussed in this volume has been funded by federal agencies. New technologies, particularly the Internet, have made data sharing easier. The implications of A-110 will affect everyone and must be addressed by the biological anthropology community. What Constitutes Data? A researcher receives a grant to study the genetics of a nonhuman primate population as part of a larger study on primate life history. Or a researcher obtains funding to study the history of a human population through mtDNA analysis. The researcher spends over a year in the field obtaining biological samples (blood, tissue, hair). The researcher returns to the laboratory to amplify and analyze the data. What are the data—the original sample? the PCR product ? the lab notebooks? the gene frequency information? Another researcher spends years at a paleontological site in a foreign country and finds, processes, and describes a fossil primate. Does the researcher negotiate with the host country for temporary removal of the fossil from the country for further study and analysis? Who curates the material? Who has access to the material? Which particular government body or agency gives permission to remove the fossil? What is the obligation of the researcher working on U.S. federal grant money and what is the responsibility to the host country and collaborators in the host country? Commentary 283 What...