•  43
    Respecting Autonomy Over Time: Policy and Empirical Evidence on Re‐Consent in Longitudinal Biomedical Research
    with Elli G. Gourna, Graeme Laurie, Osama Shoush, and Jessica Wright
    Bioethics 30 (3): 210-217. 2015.
    Re-consent in research, the asking for a new consent if there is a change in protocol or to confirm the expectations of participants in case of change, is an under-explored issue. There is little clarity as to what changes should trigger re-consent and what impact a re-consent exercise has on participants and the research project. This article examines applicable policy statements and literature for the prevailing arguments for and against re-consent in relation to longitudinal cohort studies, t…Read more
  •  14
    Background Dynamic consent has been proposed as a process through which participants and patients can gain more control over how their data and samples, donated for biomedical research, are used, resulting in greater trust in researchers. It is also a way to respond to evolving data protection frameworks and new legislation. Others argue that the broad consent currently used in biobank research is ethically robust. Little empirical research with cohort study participants has been published. This…Read more
  •  3
    Harmonised consent in international research consortia: an impossible dream?
    with Bartha M. Knoppers
    Genomics, Society and Policy 7 (1): 1-12. 2011.
  •  18
    Harmonised consent in international research consortia: an impossible dream?
    with M. Knoppers Bartha
    Genomics, Society and Policy 7 (1): 1-12. 2011.
  •  6
    Emerging Regulatory Issues for Human Stem Cell Medicine1
    with Kathleen Liddell
    Genomics, Society and Policy 1 (1): 1-20. 2005.
    The regulation of stem cell research is an issue that has drawn much comment, criticism and even judicial arbitration in recent years. An emerging issue, addressed in this article, is how the fruits of that research-stem cell medicine-are likely to be regulated en route from lab to market. Taking account of the ethical, legal, social and safety issues raised by stem cell medicine and the goals of governance, the article explains the relevant regulatory instruments (e.g. the draft UK Stem Cell Ba…Read more
  •  1
    © 2015 by the Southwestern Social Science Association. Objectives: To evaluate the impact of protests on Latinos' perceptions of commonality and competition with African Americans. We hypothesize that the reinforcement and politicization of in-group identities leads to greater identification and sense of commonality with other marginalized racial/ethnic groups. Methods: This study utilizes geocoded Latino National Survey data combined with an expanded protest event data set to estimate the effec…Read more
  •  29
    Where research was once strictly confined to one laboratory or office, investigators now widely share and compare their plans, analyses, and results. With the advent of genomic knowledge, researchers are seeking to understand the genetics and genomics of complex human disease. They are combining their efforts into international consortia in order to take on problems that face individuals around the world, such as cancer and malaria — problems that are too large to solve by one country alone. The…Read more
  •  26
    Clinical ethics committees: Clinician support or crisis management? (review)
    with Deryck Beyleveld and Roger Brownsword
    HEC Forum 14 (1): 13-25. 2002.
  •  22
    Family tree and ancestry inference: is there a need for a ‘generational’ consent?
    with Elli G. Gourna, Viktoriya Nikolova, and Nuala A. Sheehan
    BMC Medical Ethics 16 (1): 1-9. 2015.
    BackgroundGenealogical research and ancestry testing are popular recreational activities but little is known about the impact of the use of these services on clients’ biological and social families. Ancestry databases are being enriched with self-reported data and data from deoxyribonucleic acid analyses, but also are being linked to other direct-to-consumer genetic testing and research databases. As both family history data and DNA can provide information on more than just the individual, we as…Read more
  •  8
    Cross-Cultural Biotechnology: A Reader (edited book)
    with Stella Gonzalez Arnal, Donald Chalmers, David Kum-Wah Chan, Margaret Coffey, Jo Ann T. Croom, Mylène Deschênes, Henrich Ganthaler, Yuri Gariev, Ryuichi Ida, Jeffrey P. Kahn, Martin O. Makinde, Anna C. Mastroianni, Katharine R. Meacham, Bushra Mirza, Michael J. Morgan, Dianne Nicol, Edward Reichman, and Larissa P. Zhiganova
    Rowman & Littlefield Publishers. 2004.
    This book is a rich blend of analyses by leading experts from various cultures and disciplines. A compact introduction to a complex field, it illustrates biotechnology's profound impact upon the environment and society. Moreover, it underscores the vital relevance of cultural values. This book empowers readers to more critically assess biotechnology's value and effectiveness within both specific cultural and global contexts