Research ethics. Research ethics. All research has ethical implications Research activities can affect the health and wellbeing of subjects and of society as a whole There is often a tradeoff between protection of subjects and the potential social value of the research.
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Research ethics • All research has ethical implications • Research activities can affect the health and wellbeing of subjects and of society as a whole • There is often a tradeoff between protection of subjects and the potential social value of the research
Individual v. institutional ethics • All researchers must determine whether their research meets their personal standards of ethics • However, practices in the past have led to a concern that individual ethics are not adequate to protect research subjects • Incentives encourage researchers to carry out even questionable research • Historical examples of research that are either horrific (Nazi experiments on prisoners) or questionable at best (Tea-room trade)
Development of institutional safeguards • Over time, a number of ethical critiques of research practices has generated a variety of codes of conduct for researchers • The Belmont Report provides the guiding philosophy for most institutional research ethics in the United States today • Basic ethical principles: • Respect for Persons • Beneficence • Justice
Institutional Review Boards • UK, like other research universities, has set up boards for applying these ethical principles to proposed research • Required by the federal government if the institution receives federal research funding • At UK, these IRBs are located within the Office of Research Integrity
When a faculty member proposes a study she must gain acceptance of the proposal by the IRB. • All research, whether funded or not
IRBs are divided into medical and non-medical IRBs • Some focus on animal research and others on human subjects • Three levels of review: • Exempt • Expedited • Full • Research studies are reviewed on a regular basis or in the case where they need to be modified or problems have occurred
The IRB is made up of university faculty. They are not involved in the research they review. A number of guidelines for research have been written and the IRB applies them to each research proposal. They may accept a proposal, call for changes or reject. The researcher cannot go forward with the research until it is approved by the IRB.
Ethical principle #1: Respect for persons • Two moral requirements: • Individuals should be treated as autonomous agents • Persons with diminished autonomy are entitled to protection
Informed consent • Informed consent is obtained when subjects are provided with adequate information prior to a study to determine whether they are willing to act as a subject and they affirmatively agree to provide information. Most social science research includes some form of informed consent. • An opt-out system is not acceptable
The most vulnerable groups (special populations) • People who are unable to adequately weigh the potential positive and negative consequences of participation in research • Children • Some elderly • Institutionalized populations • Mental health facilities • Prisons • Circumstantially affected • Just lost baby
Informed consent for special populations • Often requires that someone act as a ‘guardian’ for the member of the special population • An adult who has the interests of the potential subject at heart • Often research on children cannot begin until the parents/guardians have consented, children have agreed to participate (if they are old enough), and sometimes even school officials have consented
Deception • When subjects are in any way misled about the nature of a study, or are given inadequate information to weigh the pros and cons of participation, then true informed consent is not possible • When considering deception, the researcher must balance the merits of deception against its costs • The researcher and the IRB may well be at odds over this • Tea-room trade • Mystery shopper • Commercial pretesting
When deception is used, its effects should be minimized by: • Providing as much true and accurate information as possible without giving away the deception • Debriefing after the data gathering is concluded
Ethical principle 2: Beneficence • The obligation to respect persons decisions, protect them from harm, and secure their well-being • Rules of beneficence: • Do not harm • Maximize possible benefits and minimize possible harms
Respect for research subjects • Treating subjects as people rather than objects of research • What about animals? • Topics/manipulations that are not appropriate • Tuskeegee syphilis study • Obedience studies • Giving a placebo to AIDS/cancer patient • ACT-UP militancy
Main concerns • Subject welfare • Physical harm? (rare) • Mental/emotional harm? (more common) • Weighed against the potential social impact of findings • What is the potential for an increase in social welfare? • Is there a potential for significant social harm resulting from the research?
Subject welfare • Will subjects be at risk of physical harm? • Rare occurrence • Studies of illegal behavior • Stanford prison experiment • Studies of stigmatized behavior • Gay and Lesbian studies
Mental/emotional harm • More common • Exposure to upsetting content • Violence, sex, etc. • Stress or fear • Milgram, etc. • Embarrassment • Demonstration of ignorance, etc. • Long-term effect of powerful stimulus • Exposure to “snuff” pornography
Research anonymity/ confidentiality • One means of protecting subjects is to assure them that the information they give will be held in confidence.
Anonymity • Once the data are collected, it is no longer possible to match the source of the data with the actual information provided • removal of names from data, etc. • potential for false data (cannot call back)
Confidentiality (more common) • Researcher agrees not to make personally identifiable information available to third parties • Publish only aggregated data • Respondent can physically be identified • Allows for checking/validity analysis • What if researcher is subpoenaed? • student drinking focus group • drug survey among adolescents
Privacy has become a significant research issue • New technologies allow for the collection of large amounts of personal data without respondent awareness/knowledge • Privacy notices are hard to understand, unclear in their implications • It is likely that new legal restrictions on collection/sharing/use of data will be developed
Major concerns • How will you handle data protection? • What about information that was inadvertently gathered? • What about respondents who change their minds?
Ethical Principle 3: Justice • Justice concerns whether the costs and benefits of research are fairly distributed. • Those who pay the costs of research (either as subjects or as taxpayers) should receive the benefits (not being excluded from use of vaccines due to their high cost, etc.) • For example, if poor people serve as subjects of medical research and then are unable to receive the medicine, the principle of justice has been broken
Stanford Prison Experiment • Power of the situation • How do the three issues covered in ethics reviews relate to the Stanford Prison Experiment?
Scientific integrity • When using scientific methods or carrying out scholarly research it is expected that you will follow the dictates of science in terms of fairness and accuracy • Pseudo-science • “Unscientific polls” • Abusing science as a means of bolstering the acceptance of non-scientific arguments is unethical • Race
Biased data collection • Researchers should not have an economic (or political, etc.) stake in the outcome of the research they conduct • Independent evaluation
Biased data collection • Sponsor interests • Government • Investment in certain topics, etc. • Influence over research • TV violence • Pornography • Private organizations, foundations • Drug companies sponsoring tests of their own drugs • RIAA research on music downloading
Biased reporting/use of data • Proprietary research • Researcher may have little control over use of findings • Sponsor may continue studying a topic until he/she gets the results he wants • Tobacco advertising; culpability • Advocacy groups • PR, “spin” • “Lies, damned lies, and statistics”
Public v. proprietary research • Political concerns • Compensation • Access to data, reports • Control over, interpretation of results • Forms of influence over study design, interpretation, use