Week 4 (Research ethics) Flashcards
Unethical
lacking moral principles, unwilling to adhere to proper rules of conduct
History of unethical research
-Historically very little formalized research oversight
-Many studies conducted on vulnerable members of society (orphans, prisoners, etc), typically without participant consent and no clear evidence (from animal models) that treatment would be effective
-Privacy and safety of participants not always considered and many examples of tragic consequences (thalidomide administration during pregnancy) (Tuskegee study)
-Turning point: In mid-20th century, increased international recognition that ethical research codes were needed, particularly to protect vulnerable populations (efforts have lasted for last several decades)
Nuremborg Code
-voluntary informed consent, expected benefits must outweigh risks, researchers must avoid injuring subject
-Created after WWII and German Nazi doctors’ unethical experiments
Declaration of Helsinki
-drafted in 1964 by World Medical Association in Helsinki, Finland, which built upon Nuremberg code
-Added that interests of subjects should always be placed above interests of society and that every subject should get the best known treatment
Belmont report
-created in 1978 by the National Commision, with 3 fundamental principles
1. Respect for persons: each individual has right to self-determination and vulnerable individuals are entitled to extra protection
2. Beneficence: research is designed to maximize benefit and minimize harm
3. Justice: equal distribution of risks across all members of society
American university institutional review board (IRB)
-researchers working with human subjects are required to submit research details to independent review boards for approval prior to the start of data collection
-Committees are charged with protecting participants and overseeing compliance with research ethical standards
-Many US researchers are also required to complete CITI human subjects training, up-to-date CTI certificate typically required by IRB offices
Continuing ethical questions
-How much protection extends to non-human animals?
-How to balance urgent medical needs with calls for limiting research scope to ensure ethical obligations met?
-Which ethical and consent guidelines should be given during international work?
-How extensive should informed consent be?
-How do we deal with unethically collected samples/data still used today (HeLa cells)
Ethical concerns central to global health research
-Often working with vulnerable populations that must be protected from coercion and unethical experimentation
-Multi-institution and international projects must consider how to ensure ethical requirements from different organizations are met
-Must consider ethics of work during emergency situations (who receives access to limited supplies, when to stop treatment)
Community based participatory research (CBPR)
-actively involves community members and stakeholders at all phases of research, including planning, data collection, data analysis/interpretation, data dissemination, designing resulting interventions
-Community members may be considered researchers (degree of involvement may vary by study, although more involvement often considered better)
-Ensures research produces information of interest and useful to study community (focuses on community identified topics) seeks to meaningfully address these issues
Benefits of CBPR
-More ethical/equitable research
-incorporates expertise and experiences of the community (leads to better research and more accurate results interpretation)
-increased community participation
-often leads to more effective interventions building on community strengths
Importance of CBPR to global health
ensure methods used and resulting interventions are relevant to the community where you are working
CBPR steps
-spend time building relationships and trust before starting research study
-consider personnel and funding needed as well as data/methods required to address community-identified questions
-seek feedback through the study
-ensure all community members have equal ability to participate throughout the project
-assess how effective your partnership is (and how you can improve it)
CBPR steps laid out
Project design → partner engagement → data collection → data analysis → reporting
(with documentation, communication, and evaluation throughout)
CBPR dissemination
-Ensure all results are presented in formats accessible to all community members
-Recognize community role in producing results and credit owed in any jointly produced materials (publish with community coauthors)
-Seek permission before publication: ensure individuals or community will not be harmed by sharing results
-Mutual respect, shared power, mutual benefit, reflection, shared knowledge → trust
Science communication importance
-Research not particularly useful if it cannot be clearly explained to people who would benefit from the information
-However, it can be difficult to simplify complex scientific ideas, demonstrate their relevance to non-specialists, and interest a diverse audience
-Considering communication strategies is therefore critical (for scientists, healthcare workers, and anyone trying to share big ideas)
Where to start with SciComm (Science Communication)
-Once you have your results, identify your audience
-Consider what your main 1-2 takeaway points are (what do you want your audience to think, feel, or do based on the info you present?)
-Connect with your audience on a personal level if possible
-Be up front about uncertainty
SciComm dissemination strategies
news releases, blogs, op-ed or opinions pieces, podcasts, short videos, TED talks, educational songs, infographics
SciComm relevance to global health
-learning how to present critically important but often complex health info to different audiences is a crucial skill
-Without effective communication to community members, policy makes, funding agencies, the media, and other scientists, global health research may not have the desired impact
Spotting misinformation
-check source/author
-ask about their agenda
-who is funding them, what credentials are
-Does the piece seem designed to cause an emotional reaction
-Question all pieces, especially if they say what you want to hear
