Navigating sensitive topics: Ensuring clarity and emotional care in survey research

Survey research is a widely used method for gathering public opinions. It doesn’t involve physical experiments, clinical trials or direct intervention in people’s lives, which might lead some to assume it carries fewer ethical challenges. But is that really the case? Our recent study exploring attitudes towards xenotransplantation suggests it isn’t.    

Xenotransplantation involves transplanting animal cells, tissues or organs into humans. Although it is an area of ongoing research, xenotransplantation remains largely experimental and is not yet practised as a routine medical procedure. While ongoing research in this area holds great potential, our study revealed that exploring such a complex and unfamiliar subject can raise profound ethical concerns. What then does this mean for the ethics of survey design, particularly when navigating morally sensitive topics?

In July 2024, the London School of Hygiene and Tropical Medicine (LSHTM), supported by the National Institute for Health and Care Research (NIHR), commissioned the National Centre for Social Research (NatCen) to explore public attitudes towards xenotransplantation through a cross-sectional survey. Using the NatCen Opinion Panel – Britain’s longest-running random probability-based panel – we gathered robust and representative data from a diverse sample of the population. Additionally, NatCen’s Questionnaire Design and Testing (QDT) team conducted cognitive interviews, refining the survey questions to ensure that they were easily understood by respondents and accurately captured their attitudes.  

Xenotransplantation raises ethical concerns related to animal welfare, human safety and religious beliefs. Given the complexity, novelty and sensitivity of the topic, it was crucial to approach the survey design process with care.  

From scientific language to clarity

Designing a survey on a topic as complex and nuanced as xenotransplantation, which is not easily understood by laypersons, required more than robust methodology – it demanded a thoughtful approach to language. Scientific terminology, whilst precise, can alienate or confuse respondents unfamiliar with the field. To ensure our questions were accessible and meaningful, we “translated” complicated concepts into clear, straightforward language without losing their essence.

During the cognitive interview phase, we assessed participants’ familiarity with the term “xenotransplantation” and invited them to suggest other ways to describe the concept. Most participants were unfamiliar with the term and struggled to provide alternatives, with one explicitly noting that they would need to look it up online to understand its meaning. Recognising the risk of disengagement and confusion, we chose to avoid the term “xenotransplantation” in the survey altogether. Instead, we described the procedure in plain language as “the transplant of organs (such as the heart or kidneys) from animals to humans”.  

Ethically, it is crucial that all respondents, regardless of their background or familiarity with scientific concepts, have an equal opportunity to understand and engage with the survey. Simplifying the term "xenotransplantation" was not merely a practical decision, but a commitment to equity, making the survey accessible to a broad and diverse audience. This approach allowed us to capture public attitudes in a truly inclusive and representative way, ensuring that the findings reflected the views of all respondents, not just those with prior knowledge or expertise.

Navigating emotional sensitivities  

The survey also raised unique ethical challenges related to the emotional impact certain questions could have on respondents. Xenotransplantation raises complex ethical concerns related to animal welfare, human safety and religious beliefs. Some view it as cruel due to the use of genetically modified animals as organ donors, while others see it as conflicting with their faith or cultural values. Additionally, many worry about medical risks, such as disease transmission and long-term health complications. To minimise potential distress, we carefully framed questions, provided clear context and ensured participants had access to support materials and contact information when needed.

During the cognitive interview phase, we tested a range of questions, including scenarios asking participants which groups should take precedence for xenotransplantation, or whether individuals with religious or moral objections to xenotransplantation should be given priority for human organs. Some participants found these questions difficult, with one commenting that answering them felt like making decisions about real people's lives. Recognising the emotional weight of these topics, we allowed respondents to select "Don’t know" or "Prefer not to say" and skip any questions they found challenging. At the end of the survey, we also provided links to support resources, including charities related to organ donation and transplantation should they wish to seek further information or assistance.

Ethically, it is crucial to balance the need for meaningful data with the responsibility to protect participants from emotional harm. Framing these questions thoughtfully, offering participants the option to skip questions, and providing resources for support after the survey enabled us to capture public attitudes in a way that reduced stress and encouraged thoughtful participation.  

Concluding thoughts  

Survey research is not without its own ethical complexities. Our study on xenotransplantation highlighted that researchers bear an ethical responsibility to approach survey design with care. By balancing accessibility with sensitivity, we can facilitate meaningful public discourse on even the most sensitive topics while minimising the risk of emotional harm.