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Week 12 by Mind Map: Week 12

1. Research Ethics

1.1. Disclosure of Incidental findings

1.1.1. 意外情况发生 Stanford Prison Experiment 过程中保安过度控制 导致实验者精神崩溃

1.2. Research Ethics board REB

1.2.1. Review by a research ethics board (REB)

1.2.2. Informed consent process – sufficient information to make decision; ability to comprehend information; voluntary; concern re: inducements or possible coercion and deception

1.2.3. Assessing and balancing risks and benefits (need to consider both probability and degree of harm)

1.2.4. Privacy and confidentiality

1.2.5. Issues of power (e.g., double agency)

1.2.6. Funding sources (e.g., possible conflicts of interest, control of data)

1.2.7. Protecting vulnerable groups (e.g., children)

1.2.8. University of Manitoba Research Ethics Board Guidelines

1.3. Research ethics

1.3.1. The Belmont report: April 18, 1979 on human trial Respect for Persons – (informed consent) treat individuals as autonomous; protect those with diminished capacity Beneficence – (assess risks & benefits) protect from harm; maximize benefits Justice – research should not involve groups unlikely to benefit from the research e.g. Nazi experiments in concentration camps; Tuskegee syphilis study

1.3.2. Tri-Council Policy Statement incorporates the dual moral obligations - respect autonomy and to protect those with developing, impaired or diminished autonomy through three core principles: requirement to seek free, informed & ongoing consent Respect for Persons recognizes the intrinsic value of human beings Autonomy not exercised in isolation; influenced by a person’s various connections to family, community, cultural, social, linguistic, religious and other groups based on as complete an understanding as is reasonably possible of the purpose of the research, what it entails, foreseeable risks, potential benefits, to t participant and others involving those who lack capacity to participate can be valuable, just and even necessary (e.g. youth; cognitive impairment; mentally ill) Concern for Welfare “the quality of that person’s experience of life in all its aspects” consists of the impact on individuals of factors such as their physical, mental and spiritual health, as well as their physical, economic and social circumstances researchers and REBs must ensure that participants not exposed to unnecessary risks Groups may benefit from the knowledge gained from research, but may also suffer from stigmatization, discrimination or damage to reputation Justice One important difference that must be considered for fairness and equity is vulnerability e.g. children; the elderly; mental health issues obligation to treat people fairly and equitably Historically, there have been instances in which power imbalance has been abused, resulting harm to participants

1.3.3. Ethical Issues Scientific misconduct Code oe thics Fabrication, falsification, or plagiarism in proposing, performing, or reviewing research or in reporting research results” (U.S. Office of Research Integrity, 2005) Whistleblowing and your supervisor Examples: Voluntary participation, free from coercion Dual agency – researcher and health care provider at the same time Required disclosure (based on legislation – e.g., child abuse) Privacy issues Incidental findings Research Involving children For the unique needs of children Challenges for research design and the consent processs Children have varying depress of maturity -metabolically, immunologically and cognitively What would you do?

1.4. Consent

1.4.1. Assent and dissent it is important to involve the individuals to the greates extent possible they may agree (assent) or not agree (dissent) for children and unabled adult

1.4.2. Required elemets specific invitation to participate in a study statement of the research purpose, the identity of the researcher, the expected duration and nature of participation, and a description of the procedures and responsibilities on the participant description of foreseeable risks and potential benefits assurance of the participant's right to refuse consent or to withdraw at any time after providing consent disclosure of any apparent or actual or potential conflict of interest on the part of researchers, their institutions or sponsors.

1.4.3. Consent Process Free and voluntary;\ always no for those who lack capacity authorized third party decision makers influence of power relationships e.g. teacher to students

1.4.4. Henrietta Lacks During her treatments, two samples were taken from her cervix without her permission or knowledge

2. Justice

2.1. Distrubuting Justice

2.1.1. Fair distribution involves identifying values that will guide process (CNA, 2000) and weighing out risk, benefits, burdens, and costs

2.1.2. Guiding Principles – What Does Fairness Look Like?

2.1.3. To each person an equal share

2.1.4. To each person according to need

2.1.5. To each person according to effort

2.1.6. To each person according to contribution

2.1.7. To each person according to merit

2.1.8. To each person according to free-market exchanges” (taken from Beauchamp & Childress, 1994, p. 330)

2.1.9. Oberlin and Bouchal (2009)

2.1.10. Egalitarianism - equality – but may allow for inequalities in order to benefit the most disadvantaged

2.2. Resources Allocation

2.2.1. Principle of Justice Libertarianism - free market approach; ability to pay for resource Utilitarianism - maximizing the greater good, minimizing the harm Restitution – compensation to right previous injustices

2.2.2. Example - organ donation Consent and opting in or opting out (presumed consent) Donation after cardiac death (DCD) Some provinces (MB, New Brunswick, Saskatchewan) do NOT accept cardiac death- rely strictly on brain death criteria In Ontario, organ and tissue donation after death by circulatory death (DCD) is now a possibility for patients who do not meet the strict criteria for neurologically determined death or brain death Definition of death in manitoba

2.3. Social justice

2.3.1. “The fair distribution of society’s benefits and responsibilities and their consequences. It focuses on the relative position of one social group in relation to others in society as well as on the root causes of disparities and what can be done to eliminate them” (CNA, 2008, p. 28).

2.3.2. Advocate for care, policies, programs, the elimination of social inequities (CNA, 2008)

2.3.3. What should nurses do? “Registered nurses have a professional ethical commitment to provide nursing care on the basis of need regardless of ethnicity, race or class and to promote social justice through development of equitable health policy.”