![]() Furthermore, participation in ED cancer research poses additional risks such as false positive results and overdiagnosis that may require invasive and potentially unnecessary follow-up treatment ( see Table 1 : Definitions of terms used in this manuscript). ![]() Hence, the potential benefits of participation, such as access to experimental and otherwise unavailable treatments, taking ownership of one’s health and increased knowledge of a condition, are less obvious in ED cancer studies. ![]() In contrast to late-stage cancer research, those sought as participants for ED cancer studies are usually cancer free or asymptomatic. While inclusive cancer research with minoritized groups has its challenges, the nature of ‘early detection’ poses further challenges. This underrepresentation leads to critical gaps which compromise the generalisability of study findings and exacerbate disparities in cancer outcomes for members of minoritized groups. As a result, they are underrepresented in early detection (ED) cancer research despite being disproportionately affected by cancer. Yet those negatively affected by power and privilege based on a characteristic they share (such as income, race, ethnicity, sexual identity, geographic location or disability), henceforth referred to as minoritized groups Footnote 1, face multiple barriers to participating in cancer research. Policymakers and experts hold that one of the most effective ways to improve cancer outcomes is by detecting it early. Instead of isolated recruitment, public involvement and engagement activities, the recommendations here aim to advance mutually beneficial and trusting relationships between researchers and research participants embedded in ED cancer research institutions.Ĭancer is a leading cause of death worldwide, accounting for almost ten million deaths in 2020. For each recommendation, the paper outlines the rationale, specifications for how different stakeholders may implement it, and advice for best practices. The recommendations focus on: Long-term relationships that build trust Sharing available resources Inclusive and accessible communication Harnessing community expertise Unique risks and benefits Compensation and support Representative samples Demographic data Post-research support Sharing results Research training Diversifying research teams. The Recommendations were formulated by a range of stakeholders at the 2022 REPRESENT consensus-building workshop and are based on empirical data, including a systematic literature review and two ethnographic case studies in the US and the UK. In light of these challenges, this paper sets out twelve recommendations to build relations of trust and include minoritized groups in ED cancer research. Minoritized groups remain underrepresented in early detection cancer research, which means that findings and interventions are not generalisable across the population, thus exacerbating disparities in cancer outcomes. Detecting cancer early is essential to improving cancer outcomes.
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