Results for ' Genetic Research'

1000+ found
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  1.  18
    The Double-Edged Helix: Social Implications of Genetics in a Diverse Society.Joseph S. Alper, Catherine Ard, Adrienne Asch, Peter Conrad, Jon Beckwith, American Cancer Society Research Professor of Microbiology and Molecular Genetics Jon Beckwith, Harry Coplan Professor of Social Sciences Peter Conrad & Lisa N. Geller - 2002
    The rapidly changing field of genetics affects society through advances in health-care and through implications of genetic research. This study addresses the impacts of new genetic discoveries and technologies on different segments of today's society. The book begins with a chapter on genetic complexity, and subsequent chapters discuss moral and ethical questions arising from today's genetics from the perspectives of health care professionals, the media, the general public, special interest groups and commercial interests.
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  2.  23
    Christian Action Research and Education (CARE): declaration on human genetics and other new technologies in medicine.Action Research Christian - 2003 - Human Reproduction and Genetic Ethics 9 (1):6.
  3.  14
    You Say Social Agenda, I Say My Job: Navigating Moral Ambiguities by Frontline Workers in a Social Enterprise.Rose Bote, Tao Wang & Corine Genet - forthcoming - Journal of Business Ethics:1-17.
    Building on the emerging literature on the ethics of social enterprises (SEs), this paper advances the underexplored role of frontline workers (FLWs) as embedded agents at the interface between communities and SEs. Specifically, we uncover the subjectivity of FLWs as they navigate moral ambiguities while performing their professional roles, dealing with rules and regulations within the organizational hierarchy and living as members of local communities. Based on an inductive case study of a microfinance organization in Cameroon, we find that FLWs (...)
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  4.  47
    Addressing the Ethical Challenges in Genetic Testing and Sequencing of Children.Ellen Wright Clayton, Laurence B. McCullough, Leslie G. Biesecker, Steven Joffe, Lainie Friedman Ross, Susan M. Wolf & For the Clinical Sequencing Exploratory Research Group - 2014 - American Journal of Bioethics 14 (3):3-9.
    American Academy of Pediatrics (AAP) and American College of Medical Genetics (ACMG) recently provided two recommendations about predictive genetic testing of children. The Clinical Sequencing Exploratory Research Consortium's Pediatrics Working Group compared these recommendations, focusing on operational and ethical issues specific to decision making for children. Content analysis of the statements addresses two issues: (1) how these recommendations characterize and analyze locus of decision making, as well as the risks and benefits of testing, and (2) whether the guidelines (...)
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  5.  19
    The Slippery Slope of Prenatal Testing for Social Traits.Courtney Canter, Kathleen Foley, Shawneequa L. Callier, Karen M. Meagher, Margaret Waltz, Aurora Washington, R. Jean Cadigan, Anya E. R. Prince & the Beyond the Medical R01 Research Team - 2023 - American Journal of Bioethics 23 (3):36-38.
    Bowman-Smart et al. (2023) argue for a framework to examine the ethical issues associated with genetic screening for non-medical traits in the context of noninvasive prenatal testing (NIPT). Such s...
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  6.  68
    Human genetic research: emerging trends in ethics.Ruth Chadwick & Bartha Maria Knoppers - 2005 - .
    Genetic research has moved from Mendelian genetics to sequence maps to the study of natural human genetic variation at the level of the genome. This past decade of discovery has been accompanied by a shift in emphasis towards the ethical principles of reciprocity, mutuality, solidarity, citizenry and universality.
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  7.  40
    Returning Genetic Research Results to Individuals: Points‐to‐Consider.Gaile Renegar, Christopher J. Webster, Steffen Stuerzebecher, Lea Harty, Susan E. Ide, Beth Balkite, Taryn A. Rogalski‐Salter, Nadine Cohen, Brian B. Spear & Diane M. Barnes - 2006 - Bioethics 20 (1):24-36.
    This paper is intended to stimulate debate amongst stakeholders in the international research community on the topic of returning individual genetic research results to study participants. Pharmacogenetics and disease genetics studies are becoming increasingly prevalent, leading to a growing body of information on genetic associations for drug responsiveness and disease susceptibility with the potential to improve health care. Much of these data are presently characterized as exploratory (non‐validated or hypothesis‐generating). There is, however, a trend for (...) participants to be permitted access to their personal data if they so choose. Researchers, sponsors, patient advocacy groups, ethics committees and regulatory authorities are consequently confronting the issue of whether, and how, study participants might receive their individual results. Noted international ethico‐legal guidelines and public policy positions in Europe and the United States are reviewed for background. The authors offer ‘Points‐to‐Consider’ regarding returning research results in the context of drug development trials based on their knowledge and experience. These considerations include: the clinical relevance of data, laboratory qualifications, informed consent procedures, confidentiality of medical information and the competency of persons providing results to participants. The discussion is framed as a benefit‐to‐risk assessment to balance the potential positive versus negative consequences to participants, while maintaining the integrity and feasibility of conducting genetic research studies. (shrink)
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  8.  38
    Returning genetic research results to individuals: Points-to-consider.Gaile Renegar, Christopher J. Webster, Steffen Stuerzebecher, Lea Harty, I. D. E. E., Beth Balkite, Taryn A. Rogalski-salter, Nadine Cohen, Brian B. Spear, Diane M. Barnes & Celia Brazell - 2005 - Bioethics 20 (1):24–36.
    ABSTRACT This paper is intended to stimulate debate amongst stakeholders in the international research community on the topic of returning individual genetic research results to study participants. Pharmacogenetics and disease genetics studies are becoming increasingly prevalent, leading to a growing body of information on genetic associations for drug responsiveness and disease susceptibility with the potential to improve health care. Much of these data are presently characterized as exploratory (non‐validated or hypothesis‐generating). There is, however, a trend for (...)
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  9.  24
    Can Genetics Research Benefit Educational Interventions for All?Kathryn Asbury - 2015 - Hastings Center Report 45 (S1):39-42.
    Pretty much everyone knows that our genes have at least something to do with how able or how high achieving we are. Some believe that we should not speak of this common knowledge, nor inquire into how genetic influence works or what it might mean. If we do not keep an open mind to the fact of genetic influence on academic achievement, however, then we cannot explore its possible implications. And if we do not consider the implications, then (...)
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  10.  25
    Genetic research & communal narratives.Dena S. Davis - 2004 - Hastings Center Report 34 (4):40-49.
    The risks and benefits of genetic research extend beyond individual subjects. Genetic research can also affect the communities to which the subjects belong, by rewriting the narratives and reconfiguring the identities that members of the community share and live by. These far‐ranging effects raise special concerns for obtaining informed consent, for which there is no simple solution.
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  11.  23
    Genetic Research and Aboriginal and Torres Strait Islander Australians.Emma Kowal, Glenn Pearson, Chris S. Peacock, Sarra E. Jamieson & Jenefer M. Blackwell - 2012 - Journal of Bioethical Inquiry 9 (4):419-432.
    While human genetic research promises to deliver a range of health benefits to the population, genetic research that takes place in Indigenous communities has proven controversial. Indigenous peoples have raised concerns, including a lack of benefit to their communities, a diversion of attention and resources from non-genetic causes of health disparities and racism in health care, a reinforcement of “victim-blaming” approaches to health inequalities, and possible misuse of blood and tissue samples. Drawing on the international (...)
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  12.  32
    Should We Undertake Genetic Research on Intelligence?Ainsley Newson & Robert Williamson - 1999 - Bioethics 13 (3-4):327-342.
    Although the concept of intelligence is difficult to define, research has provided evidence for a significant genetic component. Attempts are now being made to use molecular genetic approaches to identify genes contributing to intelligence, and to determine the ways in which they interact with environmental variables. This research is then likely to determine the developmental pathways of intelligence, in an effort to understand mental handicap and learning disorders and develop new treatment strategies. This paper reviews (...) on the genetic basis of intelligence, and discusses the ethical concerns, including the role of genetic information, the value we place on intelligence and the allocation of resources. It will be argued that the objections raised are problematic, and that because of the value of this knowledge and the prospect of improving lives, this research is morally required. We will then provide a brief analysis of the issues raised by enhancement of intelligence using genetic technology, and will argue that there is no intrinsic difference between this and other means of optimising intelligence. (shrink)
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  13.  15
    Genetic Research and Culture: Where Does the Offense Lie?Daryl Pullman & Laura Arbour - 2009 - In James O. Young & Conrad G. Brunk (eds.), The Ethics of Cultural Appropriation. Oxford, UK: Wiley‐Blackwell. pp. 115–139.
    This chapter contains sections titled: Introduction Human DNA as Cultural Property The Genetic Appropriation of Culture Community Identity, Cultural Offense and Control of Genetic Information Conclusion References.
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  14.  48
    Transforming genetic research practices with marginalized communities: A case for responsive justice.Sara Goering, Suzanne Holland & Kelly Fryer-Edwards - 2008 - Hastings Center Report 38 (2):43-53.
    : Genetics researchers often work with distinct communities. To take moral account of how their research affects these communities, they need a richer conception of justice and they need to make those communities equal participants in decision-making about how the research is conducted and what is produced and published out of it.
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  15.  12
    Genetic Research Using Archival Tissue: Ethical, Social, and Legal Considerations in the United Arab Emirates.Saeeda Almarzooqi & Carol Campbell - 2018 - Asian Bioethics Review 10 (3):219-230.
    Pathological archival tissue has been used as a source of research material for many years. The advancement in molecular techniques led to an escalated interest in genetic research on archival tissue. Research on archival tissue has been used without obtaining consents from patients, although the ethical justification for such a practice is unlikely to apply for genetic research that involves whole genome sequencing, for instance. Issues of confidentiality and patients’ autonomy are being raised as (...)
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  16.  37
    Genetic Research as Therapy: Implications of "Gene Therapy" for Informed Consent.Larry R. Churchill, Myra L. Collins, Nancy M. R. King, Stephen G. Pemberton & Keith A. Wailoo - 1998 - Journal of Law, Medicine and Ethics 26 (1):38-47.
    In March 1996, the General Accounting Office (GAO) issued the reportScientific Research: Continued Vigilance Critical to Protecting Human Subjects.It stated that “an inherent conflict of interest exists when physician-researchers include their patients in research protocols. If the physicians do not clearly distinguish between research and treatment in their attempt to inform subjects, the possible benefits of a study can be overemphasized and the risks minimized.” The report also acknowledged that “the line between research and treatment is (...)
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  17.  29
    Genetic Research as Therapy: Implications of "Gene Therapy" for Informed Consent.Larry R. Churchill, Myra L. Collins, Nancy M. R. King, Stephen G. Pemberton & Keith A. Wailoo - 1998 - Journal of Law, Medicine and Ethics 26 (1):38-47.
    In March 1996, the General Accounting Office (GAO) issued the reportScientific Research: Continued Vigilance Critical to Protecting Human Subjects.It stated that “an inherent conflict of interest exists when physician-researchers include their patients in research protocols. If the physicians do not clearly distinguish between research and treatment in their attempt to inform subjects, the possible benefits of a study can be overemphasized and the risks minimized.” The report also acknowledged that “the line between research and treatment is (...)
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  18.  18
    Genetic Research as Therapy: Implications of “Gene Therapy” for Informed Consent.Larry R. Churchill, Myra L. Collins, Nancy M. P. King, Stephen G. Pemberton & Keith A. Wailoo - 1998 - Journal of Law, Medicine and Ethics 26 (1):38-47.
    In March 1996, the General Accounting Office issued the report Scientific Research: Continued Vigilance Critical to Protecting Human Subjects. It stated that “an inherent conflict of interest exists when physician-researchers include their patients in research protocols. If the physicians do not clearly distinguish between research and treatment in their attempt to inform subjects, the possible benefits of a study can be overemphasized and the risks minimized.” The report also acknowledged that “the line between research and treatment (...)
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  19.  25
    Genetic Research Practices with Marginalized Communities: A Case for Responsive Justice.Sara Goering, Suzanne Holland & Kelly Fryer-Edwards - 2012 - Hastings Center Report 38 (2):43-53.
    Genetics researchers often work with distinct communities. To take moral account of how their research affects these communities, they need a richer conception of justice and they need to make those communities equal participants in decision‐making about how the research is conducted and what is produced and published out of it.
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  20.  25
    Genetic research and consent: On the crossroads of human and data research.Kärt Pormeister - 2018 - Bioethics 33 (3):347-356.
    This paper explores the legal and ethical concept of human subject research in order to determine whether genetic research with already available biosamples and data falls within this concept. Although the ethical concept seems to have evolved to recognize research based on data as human research, from a supranational legal perspective this form of research is not considered human subject research. Thus human subject research regulations do not apply and therefore do not (...)
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  21.  7
    Molecular genetic research on IQ: can it be done? Should it be done?Jo Daniels, Peter McGuffin & Mike Owen - 1996 - Journal of Biosocial Science 28 (4):490-507.
  22.  61
    Genetic research on rare familial disorders: consent and the blurred boundaries between clinical service and research.M. Ponder, H. Statham, N. Hallowell, J. A. Moon, M. Richards & F. L. Raymond - 2008 - Journal of Medical Ethics 34 (9):690-694.
    Objectives: To study the consent process experienced by participants who are enrolled in a molecular genetic research study that aims to find new genetic mutations responsible for an apparently inherited disorder.Design: Semi-structured interviews and analysis/description of main themes.Participants: 78 members of 52 families who had been recruited to a molecular genetic study.Results: People were well informed about the goals, risks and benefits of the genetic research study but could not remember the consent process. They (...)
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  23.  13
    Consent, commodification and benefit-sharing in genetic research. Donnadickenson - 2004 - Developing World Bioethics 4 (2):109–124.
  24.  20
    Commercial Biobanks and Genetic Research: Banking Without Checks?Mary R. Anderlik - 2003 - In Bartha Maria Knoppers (ed.), Populations and genetics: legal and socio-ethical perspectives. Boston: Martinus Nijhoff. pp. 345--373.
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  25.  45
    Protecting groups from genetic research.Daniel Hausman - 2008 - Bioethics 22 (3):157–165.
    ABSTRACT Genetics research, like research in sociology and anthropology, creates risks for groups from which research subjects are drawn. This paper considers what sort of protection for groups from the risks of genetics research should be provided and by whom. The paper categorizes harms by distinguishing process‐related from outcome‐related harms and by distinguishing two kinds of group harms. It argues that calls for community engagement are justified with respect to some kinds of harms, but not with (...)
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  26.  23
    Genetic research: Can we control it?Baroness Warnock - 2000 - Science and Engineering Ethics 6 (2):147-156.
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  27.  7
    Genetic research and the collective good: participants as leaders to reconcile individual and public interests.Ilaria Galasso & Susi Geiger - forthcoming - Journal of Medical Ethics.
    This paper problematises the notions of public or common good as weighed against individual sovereignty in the context of medical research by focusing on genetic research. We propose the notion of collective good as the good of the particular collective in which the research was conducted. We conducted documentary and interview-based research with participant representatives and research leaders concerned with participant involvement in leading genetic research projects and around two recent genetic (...)
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  28.  21
    Community engagement in genetic research: The “slow code” of research ethics?Eric T. Juengst - 2003 - In Bartha Maria Knoppers (ed.), Populations and genetics: legal and socio-ethical perspectives. Boston: Martinus Nijhoff. pp. 181--197.
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  29. Individual human rights in genetic research : blurring the line between collective and individual interests.Hélène Boussard - 2009 - In Thérèse Murphy (ed.), New technologies and human rights. New York: Oxford University Press.
     
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  30.  24
    Genetic research involving human biological materials: a need to tailor current consent forms.Sara Chandros Hull, Holly Gooding, Alison P. Klein, Esther Warshauer-Baker, Susan Metosky & Benjamin S. Wilfond - 2004 - IRB: Ethics & Human Research 26 (3):1.
  31. Privacy and policy for genetic research.Judith Wagner DeCew - 2004 - Ethics and Information Technology 6 (1):5-14.
    I begin with a discussion of the value of privacy and what we lose without it. I then turn to the difficulties of preserving privacy for genetic information and other medical records in the face of advanced information technology. I suggest three alternative public policy approaches to the problem of protecting individual privacy and also preserving databases for genetic research:(1) governmental guidelines and centralized databases, (2) corporate self-regulation, and (3) my hybrid approach. None of these are unproblematic; (...)
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  32. Genetic research, adolescents, and informed consent.Robert F. Weir & Jay R. Horton - 1995 - Theoretical Medicine and Bioethics 16 (4).
    The participation of adolescents in genetic research engenders unusual problems concerning the nature of their informed consent. In this study we analyze 70 consent documents collected from genetics investigators in the United States who conduct research with children and adolescents. We find that many consent documents do not reflect either the current or the developing ethical and legal standards for research with adolescents and that in many cases the documents are simply confusing or unclear. We make (...)
     
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  33.  6
    Genetic research with stored biological materials: ethics and practice.Leslie E. Wolf, Timothy A. Bouley & Charles E. McCulloch - 2010 - IRB: Ethics & Human Research 32 (2):7.
    This study examined how research conducted at several federally funded institutions designated as Clinical Research Centers or Specialized Programs of Research Excellence addressed the issues of consent, control over biological materials, confidentiality, and disclosure of results in protocols and consent forms for genetic research with stored biological materials. Although a majority of the documents reviewed addressed most of the issues raised in the research ethics literature, topics identified in the literature that were missing include (...)
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  34.  21
    Incidental Findings in Genetics Research Using Archived DNA.Ellen Wright Clayton - 2008 - Journal of Law, Medicine and Ethics 36 (2):286-291.
    Despite calls by some commentators for disclosing incidental fndings in genetics research, several factors weigh in favor of caution. The technology of genetics has the power to uncover a vast array of information. The most potent argument for restraint in disclosure is that much research is pursued without consent so that the individual participant may not know that research is being conducted at all. Often the work is done by investigators and at institutions with which the person (...)
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  35.  32
    A genetic researcher’s devil’s dilemma: Warn relatives about their genetic risk or respect confidentiality agreements with research participants?Imke Christiaans, M. Corrette Ploem, Els L. M. Maeckelberghe & Lieke M. van den Heuvel - 2021 - BMC Medical Ethics 22 (1):1-7.
    BackgroundWith advances in sequencing technologies, increasing numbers of people are being informed about a genetic disease identified in their family. In current practice, probands are asked to inform at-risk relatives about the diagnosis. However, previous research has shown that relatives are sometimes not informed due to barriers such as family conflicts. Research on family communication in genetic diseases aims to explore the difficulties encountered in informing relatives and to identify ways to support probands in this.Main bodyResearch (...)
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  36.  44
    Human genetic research, race, ethnicity and the labeling of populations: recommendations based on an interdisciplinary workshop in Japan.Yasuko Takezawa, Kazuto Kato, Hiroki Oota, Timothy Caulfield, Akihiro Fujimoto, Shunwa Honda, Naoyuki Kamatani, Shoji Kawamura, Kohei Kawashima, Ryosuke Kimura, Hiromi Matsumae, Ayako Saito, Patrick E. Savage, Noriko Seguchi, Keiko Shimizu, Satoshi Terao, Yumi Yamaguchi-Kabata, Akira Yasukouchi, Minoru Yoneda & Katsushi Tokunaga - 2014 - BMC Medical Ethics 15 (1):33.
    A challenge in human genome research is how to describe the populations being studied. The use of improper and/or imprecise terms has the potential to both generate and reinforce prejudices and to diminish the clinical value of the research. The issue of population descriptors has not attracted enough academic attention outside North America and Europe. In January 2012, we held a two-day workshop, the first of its kind in Japan, to engage in interdisciplinary dialogue between scholars in the (...)
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  37.  9
    Genetics Research and Social Roles: On a Collision Course?David J. Doukas - 1991 - Journal of Clinical Ethics 2 (4):258-259.
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  38.  39
    Disclosing genetic research results: Examples from practice.Kelly E. Ormond - 2006 - American Journal of Bioethics 6 (6):30 – 32.
  39.  28
    Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles.Laura M. Beskow & P. Pearl O'Rourke - 2015 - Journal of Law, Medicine and Ethics 43 (3):502-513.
    We surveyed IRB chairs' perspectives on offering individual genetic research results to participants and families, including family members of deceased participants, and the IRB's role in addressing these issues. Given a particular hypothetical scenario, respondents favored offering results to participants but not family members, giving choices at the time of initial consent, and honoring elicited choices. They felt IRBs should have authority regarding the process issues, but a more limited role in medical and scientific issues.
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  40.  42
    Reconstruing Genetic Research as Research.M. Therese Lysaught - 1998 - Journal of Law, Medicine and Ethics 26 (1):48-54.
  41.  28
    Population Genetic Research and Screening: Conceptual and Ethical Issues.Eric Juengst - 2007 - In Bonnie Steinbock (ed.), The Oxford handbook of bioethics. New York: Oxford University Press.
    Like all community-based public health campaigns, proposals to use genetic information to improve the health and welfare of communities, whether the old eugenic sterilization campaigns or the routinized population screening programs of today's ‘public health genetics’, can involve asking affected individuals to make special sacrifices or assume special responsibilities on behalf of the community's welfare. Moreover, unlike public health interventions that restrict individual liberties in order to prevent health problems which all community members risk more or less equally, (...) prevention strategies always require sacrifices on the part of the community who face the genetic risks in question on behalf of those who do not. The irony of ‘community genetics’ is that most human communities are much too heterogeneous to face universal gene pool disasters. (shrink)
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  42.  28
    Translating Genetic Research into Preventive Intervention: The Baseline Target Moderated Mediator Design.George W. Howe, Steven R. H. Beach, Gene H. Brody & Peter A. Wyman - 2015 - Frontiers in Psychology 6.
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  43.  10
    Incidental Findings in Genetics Research Using Archived DNA.Ellen Wright Clayton - 2008 - Journal of Law, Medicine and Ethics 36 (2):286-291.
    There are countless variations on this theme. The call can come from one of your own physicians who was called by the investigator. Your physician may or may not be well informed on what the reported finding about Disease Y means or how to respond. DNA testing can reveal more than susceptibility to disease. People can learn that they do not have the biological connections — parentage or evidence of ethnic origin — that they thought they did.Colleagues who serve on (...)
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  44.  19
    What genetic research on intelligence tells us about the environment.Robert Plomin, Stephen A. Petrill & Alexandra L. Cutting - 1996 - Journal of Biosocial Science 28 (4):587-606.
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  45.  43
    Broad Data Sharing in Genetic Research: Views of Institutional Review Board Professionals.Amy Lemke, Maureen Smith, Wendy Wolf & Susan Trinidad - 2011 - IRB: Ethics & Human Research 33 (3):1-5.
    Genome-wide association studies raise important ethical and regulatory issues. This is particularly true of the current move toward broad sharing of genomic and phenotypic data. Our survey study examined the opinions of professionals involved in human subjects protection regarding genetic research review. The majority indicated that it is important for their institutional review board to offer guidance about developing and using a data repository or biobank that includes genetic data, and also about sharing this data with other (...)
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  46.  75
    Is Genetics Research "Minimal Risk"?Jon F. Merz - 1996 - IRB: Ethics & Human Research 18 (6):7-8.
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  47.  22
    An Update to Returning Genetic Research Results to Individuals: Perspectives of the Industry Pharmacogenomics Working Group.Sandra K. Prucka, Lester J. Arnold, John E. Brandt, Sandra Gilardi, Lea C. Harty, Feng Hong, Joanne Malia & David J. Pulford - 2014 - Bioethics 29 (2):82-90.
    The ease with which genotyping technologies generate tremendous amounts of data on research participants has been well chronicled, a feat that continues to become both faster and cheaper to perform. In parallel to these advances come additional ethical considerations and debates, one of which centers on providing individual research results and incidental findings back to research participants taking part in genetic research efforts. In 2006 the Industry Pharmacogenomics Working Group offered some ‘Points-to-Consider’ on this topic (...)
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  48.  18
    Genetics research and race: whither bioethics?Pamela Sankar - 2009 - In Vardit Ravitsky, Autumn Fiester & Arthur L. Caplan (eds.), The Penn Center Guide to Bioethics. Springer Publishing Company. pp. 391.
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  49.  5
    Genetic research: a survey of methods and main results.H. Grüneberg - 1961 - The Eugenics Review 53 (3):157.
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  50.  9
    Informed consent and genetic research.Ruth Chadwick - unknown
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