Ethics in Kinesiology Research

Ethical Considerations in Research

• Ethical standards in research are important within the kinesiology research process.
• The core ethical principles and guidelines influence planning, data generation/analysis, and knowledge translation.
• Engaging in research with Indigenous peoples requires unique ethical considerations.
• Processes are needed to ensure integrity in research and science

Ethical Standards

• Engaging in ethical research is the most important responsibility of researchers.
• Ethics policies focus on respecting study participants’ rights, and protecting them from harm.
• "Ethics" and "respect" are often used interchangeably.
• Ethics should be viewed as an ongoing process not just a single event

Ethical and Research Policies

• Black woman Henrietta Lacks' cells were taken without her consent in 1951.
• Her cells led to significant contributions in medical research.
• Her cells, known as HeLa cells, were successfully cultured and replicated outside the human body.
• Hela cells have been crucial in numerous scientific advancements, including vaccines and cancer treatments.
• Henrietta Lacks died of cervical cancer in 1951, and her story raises ethical questions about the use of human cells in research without consent.
• Research practices/policies have been developed in response to unethical research practices, such as "medical experiments" by Nazi researchers.
• The Nuremberg Code was developed and is known as the ten commandments of ethical human medical research; it includes voluntary consent.
• In Alabama (1932-1972) the Tuskegee Syphilis Experiments examined the full progression of untreated syphilis among ~400 black men.
• Patients were told they were being treated for "bad blood" and were given only aspirin and mineral supplements, even though penicillin was an identified treatment despite the Nuremberg code.
• Researchers convinced local physicians to not treat the disease, which allowed the study to continue.
• In 1956, lasting 14 years, Willowbrook Institute Experiments in Staten Island, New York, people living with intellectual disabilities were unknowingly infected with hepatitis virus in an attempt to track the infection.
• Researchers for Willowbrook argued that hepatitis was endemic and patients would have eventually contracted the disease anyway, and the study would provide opportunities for researchers to monitor the course of the disease.
• The BC Sexual Sterilization Act (1933-1979) gave the B.C. Eugenics Board the right to sterilize patients living in institutions without their consent.
• This treatment ensured the disability would not be passed down to future generations as means of controlling behavior.

Modern Research Ethics

• Ethics is essential and policies involving humans focus on respect and protecting participants from harm.
• The Tri-Council Policy Statement: Ethical Conduct for Researchers Involving Humans (TCPS-2; 2022) is a joint ethical statement of Canada's three federal funding agencies, to which all researchers funded by these agencies must adhere.
• The main purpose of TCPS2 is to ensure individuals participating in research are treated ethically; it also upholds the integrity of the research process.
• The 2022 TCPS2 covers aspects of research, including balancing scientific/social value, integrity, privacy/confidentiality, recruitment/informed consent, and research with Indigenous communities/international research

Pillars of TCPS2

• Research is meant to enhance our understanding of the world, and it explores unknown, which generally has some risk.
• Human research must be ethical, in that participants must understand and freely choose to participate despite potential risks.
• TCPS2 is informed by three core principles conveying the value of human dignity: respect for persons, concern for welfare, and justice.

Respect for Persons

• Respect for persons involves guidelines to ensure that individuals are treated with dignity and autonomy, acknowledging the intrinsic value of human beings and the respect due to them.

Concern for Welfare

• Concern for welfare refers to the quality of a person’s experience of life in all aspects.
• Participants should not be exposed to unnecessary risks, and researchers should consider their physical, mental, and spiritual health.
• For a research study to be ethical, benefits should outweigh the foreseeable risks.
• The principle of Concern of Welfare imposes ethical obligations on REBs and researchers by protecting participants from unnecessary risks.

Justice

• Justice is the obligation to treat people fairly and equitably.
• Treating persons equitably requires fair distribution of the burdens and potential benefits of research; requires researchers to carefully select which participants to include/exclude for the study.
• Questions meriting consideration for justice include: why this specific group of participating prospects; good rationale for participating inclusion/exclusion; and who will be exposed to the risks vs. who will have the benefits?
• All core principles are interdependent, and applications vary across research studies, including: participants engaging in various ways/contexts (respect); various types of risks in research designs (welfare), and insuring proper inclusion/exclusion (justice).
• By using core principles, researchers balance protection of participants and legitimate research requirements

Research Ethics

• Most Canadian universities use TCPS 2 guidelines, guided by its three core principles.
• Canadian universities and colleges will have Research Ethics Review Boards (REBs) and an ethics policy.
• All researchers must stick to all ethics policies.
• Kinesiology researchers commonly work with biohazards, including blood/sweat/saliva; researchers must know how to appropriately handle, store, and dispose of these biohazards.
• A biohazard is any organism or its derivative that could negatively influence another organism.
• Biohazards approval is required from the researcher's university.
• By engaging in biohazards reviews and getting approvals, researchers demonstrate a commitment to ensuring research adheres to established safety guidelines/regulations
• These are just one form of risks researcher are exposed to, which isn't just related to participants but can be related to the researcher's activities.
• Researchers applying guidelines for their research is a responsibility, but no single ethics policy can provide answers to all issues arising throughout.
• Researchers must ensure participants provide free, informed, and ongoing consent during research, following TCPS 2: consent is voluntary, can be withdrawn at anytime, and if withdrawn; a data/biological materials can be requested for withdrawn.
• Researchers provide incentives to participants

Consent

• If participants lack decision-making capacity (e.g. children aged 6-18 or those with impairments), assent or willingness to participate may be required.
• The TCPS2 states "where an authorized third party has consented on behalf of an individual who lacks legal capacity, but that person has some ability to understand the significance of the research, the researcher shall ascertain the wishes of that individual with respect to participation. Prospective participants' dissent will preclude their participation."
• Partial disclosure or deception: is possible but varies between conditions set out in the TCPS 2 .
• Researchers demonstrate the study has minimal risk to participants, the welfare of participants is not adversely affected as result of consent alternation and disclosure / deception is necessary to answer research and conduct study.

Privacy & Confidentiality

• Privacy: A person's right to be avoid intrusion from others.
• Confidentiality: Researcher's obligation to safeguard information

Research and Scientific Integrity

• Respect for privacy requires researchers to keep participant info confidential.
• Researchers outline privacy/confidentiality and strategies used to safeguard info.
• Researchers funded by federal funding agencies adhere to the Tri-Agency Research Integrity Policy outlined/detailed in the Tri-Agency Responsible Conduct of Research.
• The Tri-Agency Framework: Responsible Conduct of Research outlines the researcher's responsibilities for ensuring research is honest, open, fair, and accountable.

Research Misconduct

• Research integrity: is compromised when research misconduct takes place (occurs when proposing performance, reviewing/reporting results; it has three types: falsification, fabrication, plagiarism. -Falsification: Changing of research (e.g omitting data) to misrepresent data. -Plagiarism: Taking from other work or results and failing to give credit or acknowledgement of the source. -Fabrication: When researchers creates data and record or report such data.

Explore the crucial role of ethics in kinesiology research including the impact of historical unethical practices on current policies. Understand ethics as an ongoing process and the significance of informed consent, respect, and data integrity. Learn how ethical principles influence research planning and practice.