Social, Cultural, Environmental, and Population Health Research

Scenario 1: Research using Social Media

You are part of a research team seeking to understand some of the social and cultural determinants that may be influencing the higher rates of suicide in teenagers who are openly identified as lesbian, gay, bisexual, or transgender (LGBT). Background research conducted by your team revealed that many LGBT youth discuss issues related to depression and suicide on online social networking sites. As part of your project, you would like to create an online social network page to attract LGBT youth. This page will invite them to raise and share their thoughts about important issues relevant to suicide and depression with other viewers. It will also provide contact information for those seeking professional help. Your team plans to review the page regularly and analyze the online conversations to determine common themes. You will also keep track of how popular the website is by counting visits and online contribution to discussions.

Discussion questions:

  1. What are some of the potential outcomes for users of your website?
  2. Is this type of research ethical? How can the researchers ensure that participants are fully aware of the risks and benefits of participation?
  3. Would your opinions about this scenario change if it involved a different group of people (e.g., male athletes) or health topic (e.g., brain injury prevention in full contact sports) or recruited participants using other methods (e.g., telephone recruiters instead of social media)?

Scenario shift:

The initial phase of this research study has been successful and you better understand some of the causes of suicide and depression in teenagers who identify as LGBT. However, you would now like to explore the rates of depression and suicidal thoughts in teenagers from the general community and compare these to the findings from the LGBT study. You decide to develop a survey to post on your online page as well as other teen’s friendly sites. You are concerned that revealing the topic of the survey (depression and suicide) may bias your results as those who are depressed/ suicidal may be more likely to answer it. Instead, you state that the survey is about a non-sensitive topic – opinions about local nightlife. The survey has some questions about nightclub events and alcohol consumption but also has lots of questions about suicide and depression.

Additional discussion questions:

  1. Is it ethical to use deception in survey research? Why or why not? Would your views differ if this study involved face-to-face interviews or focus groups?
  2. Would your opinions about using deception change if it involved a different group of people (e.g., male athletes) or health topic (e.g., brain injury prevention in full contact sports)?
  3. What is the role of informed consent in this situation?
  4. What are your ethical obligations to the teenagers who complete the survey? What about those whose survey results suggest they are very depressed and/or suicidal?

Relevant ethics guidance documents:

Links to the Ethics Cycle conceptual framework:

  • Through this scenario, participants can address issues such as:
    • Design project (methodologies that include deception raise important ethical issues that must be considered carefully before they are implemented) (KC).
    • Monitor knowledge use (researchers should be aware of their responsibilities associated with monitoring knowledge uptake and use) (KT).
    • Analyze data (collect data and recruit participants – how researchers recruit participants and collect data can impact the methodological choices available and how results can be analyzed) (KC).
    • Draw conclusions (researchers should be aware of how their conclusions impact individuals and groups) (KC).

Links to relevant articles:

Discussion Guide:

  1. Potential positive outcomes include fostering dialogue and outreach and reducing isolation. Negative outcomes include the possibility of socially stigmatizing those who participate.
  2. Research may be considered ethical if the potential benefits of research outweigh the potential harms. Harms and benefits of the research should be discussed including the potential loss of privacy, stigmatization, implications of results/findings, etc. If deemed necessary, researchers can use a variety of quantitative and qualitative methods to confirm that participants are aware of the harms and benefits of research participation including surveys, interviews, etc.
  3. Consider how involving different groups changes the potential benefits/harms balance of the proposed research, including the vulnerability of the group in question. Think through the harms and benefits associated with different recruitment methods.
  4. The ability to carry out the research without the use of deception should be discussed. According to TCPS2, deception may be justified if the research cannot be conducted without the use of deception, and if the benefits of the research outweigh potential harms. Deception disclosure is often required/warranted. Face-to-face interviews/focus groups may change the harms/benefit balance (e.g., while there may be some benefits to the face-to-face approach, risks to privacy and confidentiality may increase). Strict confidentiality cannot be maintained in a focus group setting because a researcher cannot control what participants say to others after they leave the room. They can request confidentiality, but cannot guarantee it. Informed consent should serve the role of respecting the autonomy of the research participant. Usually, this involves ensuring consent is fully informed (i.e., all risks are disclosed). However, consent cannot be fully informed when deception is required and only partial consent can be obtained. Disclosure of the deception after research data has been collected may be warranted and help address autonomy-related issues.
  5. Consider how involving different groups changes the potential benefits/harms balance of the proposed research, including the vulnerability of the group in question.
  6. Risks of the research should be considered. As a researcher conducting research according to TCPS2 guidelines, you must protect human participants, which may include providing psychological support/referral to those found to be ‘at risk.’

Scenario 2: Occupational Health

You recently joined a research team that conducts health risk assessments with seasonal workers on farms. An assessment conducted five years ago showed that a popular pesticide used by crop farmers should not significantly increase their cancer risk through either dermal or inhalation exposure to the chemical. However, follow-up research conducted this year reveals significantly higher rates of skin cancer in clusters of farm workers who use this pesticide.

You were asked to spearhead a social science research project to conduct telephone interviews with farm workers from this population to determine if they are in fact using the protective gear recommended by the producers of the pesticide (e.g., long sleeves, boots, gloves, masks). Most of those who are interviewed report that they are in fact using the protective gear and applying the pesticide as directed. Your co-workers are satisfied that the higher rates of skin cancer in this cohort must be due to sun exposure in Canada or in their home countries and other hazards known to be associated with farming and not due to this particular pesticide. However, you would like to do follow-up research to conduct site visits to study the farmer workers’ actual behaviour in person but are unsure if you could or should justify using more funds for this research study. There have been massive cut backs in your organization and if you pursue additional funding for this research study, funds will have to be cut elsewhere. What should you do?

Discussion questions:

  1. What are your responsibilities as a member of this research team?
  2. Who are the stakeholders for this study?
  3. What are some of the potential consequences of pursuing additional funding for this project?
  4. What are some of the potential consequences of not pursuing additional funding for this project?

Scenario shift:

You decide to pursue additional funding to conduct surprise spot checks on randomly selected farm workers from your interview study. When they agreed to be interviewed, you told them that you may want to do some follow-up research with them but did not explicitly get permission from owners to visit their farms. Many of the farm owners and farm workers are annoyed by your impromptu visit but reluctantly allow you to review their pesticide protocols. During your visits, you determine that some of the farm workers have not been following all the manufacturer suggested procedures with the pesticide every time they use it. In addition, you find that many of the farm workers who have experienced higher rates of skin cancer are also using the same two or three other pesticides in addition to the one you are studying. This multiple exposure scenario may explain their higher skin cancer rates.

Additional discussion questions:

  1. Was it wrong for you to conduct surprise site visits without informed consent from both the farm workers and the farm owners prior to the visit? What are some of the possible consequences of not acquiring informed consent prior to the visit?
  2. What responsibilities do the farm owners have to the seasonal workers they employ? As a researcher conducting this study, do you have a duty to report exploitation of farm workers?  Under what circumstances?
  3. Suppose that the results of your site visits help to explain the increased skin cancer rates in these farm workers. Does this make the visits more acceptable? What if the results from the site visits do not help explain the increased cancer rates? 

Relevant ethics guidance documents and selected readings:

Links to the Ethics Cycle conceptual framework:

  • Through this scenario, participants can address issues under the following topics:
    • Analyze data (how researchers recruit participants and obtain informed consent significantly impacts their ability to access and then analyze data) (KC).
    • Adapt knowledge to context (research should empower participants) (KT).
    • Toward next generation research (activities conducted during the KT process can impact the ability of researchers to conduct future studies with the same participants) (KT).
    • Sustain knowledge use (KT) (it is important for researcher to build capacity through their research and consider the costs associated with lost opportunities).
    • Toward KT of results (resource allocation decisions and tradeoffs must be carefully analyzed throughout the knowledge translation process) (KC.)
    • Selection of evidence (KC).

Discussion Guide:

  1. Discuss responsibilities to: the funder; other research team members; your organization; research participants; current and future farm workers; and society (bear in mind societal costs such as health care for sick farm workers).
  2. Stakeholders include: current and future farm workers using the pesticides and their families; farm owners; all Canadians who are potentially impacted through improper use of pesticides; pesticide manufacturers; etc.
  3. Potential consequences include: confirming results (or proving otherwise); diverting funds from other research studies/projects/employees; and improving the lives of farm workers and their families.
  4. Consequences of not pursuing further funding include producing incorrect or incomplete results that do not accurately capture the harms of pesticide use (including harms to current and future farm workers) as well as other social considerations impacting other stakeholders (such as Canadian Society, pesticide manufacturers, etc., as discussed above).
  5. Consider whether the research could be conducted in any other way. What are the harms involved and how do they weigh against potential benefits? Consequences of not obtaining informed consent include: destroying trust; refusal of participants to take part in future research studies; and public backlash towards your organization.
  6. Justice and fairness considerations such as vulnerability, coercion, autonomy, and rights should be discussed. Degree of risks associated with exploitation such as immediacy of risk, impact of exposure, knowledge of risk (by the farmers and farm workers) etc. should also be discussed.
  7. Results of the research change the harm/benefit balance in considering the ethical permissibility of research. Discuss the difficulty of knowing this prior to obtaining results, and how this uncertainty may be addressed when considering whether research is permissible. Do the means justify the ends in this case?
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