Browsing by Subject "Informed Consent"
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Item Autonomy and consent in biobanks(2010-02) Schwartz, Peter H.Item A Comprehensive Primer to Library Learning Analytics Practices, Initiatives, and Privacy Issues(American Library Association, 2020-04) Jones, Kyle M. L.; Briney, Kristin A.; Goben, Abigail; Salo, Dorothea; Asher, Andrew; Perry, Michael R.; Library and Information Science, School of Informatics and ComputingUniversities are pursuing learning analytics practices to improve returns from their investments, develop behavioral and academic interventions to improve student success, and address political and financial pressures. Academic libraries are additionally undertaking learning analytics to demonstrate value to stakeholders, assess learning gains from instruction, and analyze student-library usage, et cetera. The adoption of these techniques leads to many professional ethics issues and practical concerns related to privacy. In this narrative literature review, we provide a foundational background in the field of learning analytics, library adoption of these practices, and identify ethical and practical privacy issues.Item The ethics of information: absolute risk reduction and patient understanding of screening(Journal of General Internal Medicine, 2008-06) Meslin, Eric M.; Schwartz, Peter H.Some experts have argued that patients should routinely be told the specific magnitude and absolute probability of potential risks and benefits of screening tests. This position is motivated by the idea that framing risk information in ways that are less precise violates the ethical principle of respect for autonomy and its application in informed consent or shared decision-making. In this Perspective, we consider a number of problems with this view that have not been adequately addressed. The most important challenges stem from the danger that patients will misunderstand the information or have irrational responses to it. Any initiative in this area should take such factors into account and should consider carefully how to apply the ethical principles of respect for autonomy and beneficence.Item Experiences in Bioethics from Kenya: Equity, Informed Consent, and Community Participation in Research(2006-03-24T16:42:31Z) Sidle, JE;Second lecture in a series: International Research Ethics. February 23, 2006. Lecture I.Item Informed consent: A comparative study of attitudes among pediatric dentists and trial attorneys in Indiana(1988) Buccino, Michael A.; Avery, David R.; Karlson, Henry C.; Jones, James E. (James Earl), 1950-; Johnson, Bruce E.; Gillman, Jeffrey B.; Vash, Bruce W.Malpractice litigation is on the increase and a lack of informed consent is more frequently becoming primary and secondary causes of action. A study was designed to compare and analyze the viewpoints of Indiana pediatric dentists and trial attorneys concerning the doctrine of informed consent. The ultimate goal was to share the information with both groups and raise the level of awareness of the doctrine among pediatric dentists. A three-page questionnaire dealing with the doctrine of informed consent was mailed to 85 pediatric dentists and 350 trial attorneys practicing in Indiana. The response rate for pediatric dentists was 70.6 percent and the response rate for trial attorneys was 61.4 percent. Overall, most pediatric dentists and trial attorneys were moderately familiar with the doctrine of informed consent. However, trial attorneys do not feel that pediatric dentists conform to the doctrine, while pediatric dentists perceive that they do conform. Pediatric dentists and trial attorneys recommend that informed consent be obtained orally and then documented on an informed consent form. Both professional groups agree that obtaining informed consent is necessary in the practice of pediatric dentistry. Unfortunately, pediatric dentists and trial attorneys do not f eel that predoctoral dental school education or specialty training prepares the pediatric dentist to obtain an informed consent. Not surprisingly, both groups feel that pediatric dentists are more concerned with obtaining informed consent today than they were in the past. Most pediatric dentists are obtaining informed consent in less than five minutes. However, pediatric dentists feel that the time spent obtaining informed consent has either remained the same (55.9 percent) or increased (44.1 percent); trial attorneys feel that this trend has increased (81.5 percent). Overall, pediatric dentists and trial attorneys disagree on whether parental consent is required for specific patient types. Moreover, the two groups agree on the type of consent necessary. For 20 dental procedures (54 percent) and disagree on 17 dental procedures (46 percent). Finally, most trial attorneys and pediatric dentists feel that conforming to the doctrine of informed consent reduces or eliminates future malpractice litigation.Item International Research Ethics: A Needs Assessment of Research Ethics Capacity Final Report and Responses(2006-09-11T13:32:14Z) Meslin, Eric M.; Sidle, JE; Wools-Kaloustian, K; Were, E; Salmon, K; Chuani, CInternational collaborative research often raises challenging ethical issues for researchers, review committees and institutions. To date, much of the commentary and discussion surrounding these issues have focused on difficulties in interpreting guidelines, regulations, and policies and on the lack of harmonization. Efforts at regulatory reform and guideline development is one method of contributing to research ethics capacity building, but these are “top-down” approaches involving governments, regulatory agencies, and the challenge of achieving consensus. A complementary strategy is to work from the “ground up”: fashioning collaborative agreements between institutions, ethics review committees, and researchers. Working from the “ground up,” we conducted a needs assessment with participants from the Indiana University School of Medicine and the Moi University Faculty of Health Science in order to determine how best to implement a Memorandum of Understanding (MOU) developed between the two institutions. The MOU was designed to address the working relationship between the two universities with respect to their joint research activities and was the product of a Workshop convened in Eldoret, Kenya in February 2003. This work is a direct result of the MOU which explicitly states that “It is expected and intended that among the actions arising from this MOU will be the development of policies, Standard Operating Procedures and other resources that will address specific issues not mentioned here.” The interviews and focus groups provided a wealth of information about current knowledge, policies, procedures, and systems in place at MU and IU, respectively. They also provided a rich source of ideas for enhancing research ethics capacity.Item A Needs Assessment to Build International Research Ethics Capacity at Moi University(University of California Press Caliber (Online service), 2006-06) Sidle, JE; Were, E; Wools-Kaloustian, K; Chuani, C; Salmon, K; Tierney, WM; Meslin, Eric M.International collaborators in biomedical sciences face ethical challenges in the design,review, and conduct of research. Challenges include differences in research ethics capacity, cultural differences in interpretation and application of ethical principles, and cooperation between ethics review boards at collaborating institutions. Indiana University School of Medicine (Indianapolis, USA) and Moi University Faculty of Health Sciences (Eldoret, Kenya)developed a Memorandum of Understanding (MOU) to establish greater cooperation between their ethics review boards, followed by a joint needs assessment to assess barriers to implementing the MOU. Focus groups and interviews at each institution revealed that while each side verbalized understanding and respect for the other's culture, there were misunderstandings deeply rooted in each culture that could potentially derail the collaboration. Although the participants at each university agreed on the major principles and issues in research ethics and on the importance attributed to them, a more in-depth evaluation of the responses revealed important differences. Methods to address these misunderstandings are outlined in the recommended Best Practices.Item Oral History and Human Subject Research: A Roundtable and Community Conversation on the Current State of Risks, Regulations, and Ethics Reviews(2024-11-02) Bravent, Jay-Marie; Boyd, Douglas A.; Dilger, Kirsten; Pieczko, Brandon T.; Terry, KopanaThe COVID-19 pandemic has highlighted the interconnections between public health research and oral history. The 2022 Nelson Memo and 2018 EU GDPR have raised awareness about research data, public access, retention, and transparency. As research protocols utilizing interview procedures have increased, so too have the risks associated with interviewees speaking publicly about political and social issues. Threats and targeting of ethnic groups, undocumented immigrants, libraries, and the LGBTQA+ community grow, along with worries about social media shaming or job loss for interviewees. AI. Deep fakes. Identity theft. As the importance of oral history in this shifting research context and public spotlight continues to grow, projects must increasingly adhere to data privacy protections, retention guidelines, transparency regulations, and ethics review. Social science and humanities research protocols must meet new criteria from peer-reviewed journals, Institutional Review Boards, institutional research and legal office reviews, federal agencies, and funding organizations. How can oral history researchers and practitioners adapt and support each other? How should interviewers prepare, train, and anticipate new levels of peer review and public scrutiny? How do we navigate the different legal and institutional interpretations of “exclusion” and “exemption”? All while preserving academic freedom and open repository access to oral history interviews? Join us for a discussion of the current state (and future) of oral history within the frameworks of human subject research review, data requirements, government regulations, cultural literacy guidelines, and best practices for ensuring protections for interviewees.Item Ten years in Guatemala with Indigenous Peoples: Lessons I'm still to learn!(2006-03-24T16:58:49Z) Kowolik, MJSecond lecture in a series: International Research Ethics. February 23, 2006. Lecture II.Item To be or not to be - a research subject(Cambridge University Press, http://www.cambridge.org/9780521744416, 2010) Meslin, Eric M.; Schwartz, Peter H.Most people do not know there are different kinds of medical studies; some are conducted on people who already have a disease or medical condition, and others are performed on healthy volunteers who want to help science find answers. No matter what sort of research you are invited to participate in, or whether you are a patient when you are asked, it’s entirely up to you whether or not to do it. This decision is important and may have many implications for your health and well-being, as well as those of other patients now and in the future. Making a good decision – the right one for you – requires you to become educated about topics you may not have thought about before, some of which may be quite complicated. This chapter explains the key issues to help you make a good decision.