Investigating ELSI issues that may facilitate or impede clinical translation of epigenomic research

调查可能促进或阻碍表观基因组研究临床转化的 ELSI 问题

基本信息

批准号：
10698111
负责人：
Erika A Waters
金额：
$ 56.03万
依托单位：
WASHINGTON UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2022
资助国家：
美国
起止时间：
2022-09-06 至 2027-06-30
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10698111
关键词：
Address Affect American Indians Asian Basic Science Behavior Belief Biomedical Research Black race Cell division Chemicals Clinical Clinical Trials Communication DNA Development Discrimination Disease Education Environmental Exposure Environmental Pollutants Environmental Pollution Environmental Risk Factor Epigenetic Process Equity Ethnic Origin Ethnic Population Exposure to Focus Groups Fostering Foundations Gene Expression General Population Generations Genes Genetic Genetic Code Genetic Determinism Genomics Health Hispanic Inequity Inherited Knowledge Learning Life Style Link Mass Media Methods Misinformation Modification Molecular Native Hawaiian or Other Pacific Islander Not Hispanic or Latino Participant Perception Persons Phase Physical activity Population Process Public Health Practice Race Research Research Personnel Risk Sampling Shapes Stigmatization Surveys Technology Testing Therapeutic Time Tobacco smoking behavior Translating Translation Process Translations Underrepresented Populations Underserved Population clinical application clinical practice clinical translation college design disadvantaged background epigenomics essentialism ethical, legal, and social implication experience experimental study genetic approach grandchild health care availability health care disparity health disparity health inequalities marginalization marginalized population member news novel therapeutics perceived discrimination population based practical application prevent racial population racism social social media social stigma social stress sociodemographics therapeutic target uptake

项目摘要

ABSTRACT Environmental factors that influence disease may do so by chemically altering parts of the DNA that regulate gene expression. These modifications to the genetic code are referred to as “epigenetics.” Epigenetic changes can be acquired via exposure to environmental pollutants, social stress, or lifestyle behaviors. The benefit or harm of these changes depends on the purpose of the gene and how the change alters genetic expression. Communication facilitate from genetic strategies that help people understand and use epigenetic information are needed to (1) translation o epigenetics research to clinical settings, (2) address potentially misleading information the mass media, and (3) prevent the propagation of harmful beliefs associated with epigenetics, such as determinism, essentialism, discrimination, racism, and stigma. Our objective is f to facilitate the translation process by developing epigenetic communication strategies that are understandable and meaningful to socio-demographically diverse audiences, and that minimize harmful beliefs (e.g., determinism). Thespecific aims will: (1)Determine how people come to understand and interpret epigenetics information; (2) Examine the ethical, legal, and social implications (ELSI) of epigenetics for (a) creating or minimizing harmful beliefs and (b) promoting or discouraging acceptance of using epigenetics in clinical settings; (3) identify strategies for communicating information about epigenetics in a way that fosters understanding of epigenetic concepts, minimizes harmful beliefs, and increases acceptance of using epigenetics in clinical settings; and (4) Determine how race, ethnicity, and formal education shape the results of Aims 1-3. We will use an exploratory sequential mixed methods design that includes one qualitative phase followed by two consecutive quantitative phases. The qualitative phase will include 20 focus groups (N=160 total, n=8 per group). The quantitative phases will include a nationally-representative, population-based survey (N=1,870) and a full-factorial experiment to test communication strategies (N=1,954). The of non-Hispanic and participants translation about demographically marginalized public a sample for each phase, which includes members the general public will be stratified to be approximately equally divided by race and ethnicity (i.e., Hispanic, Black, non-Hispanic White, non-Hispanic Asian, non-Hispanic American Indian, Native Hawaiian, other Pacific Islander) and approximately equally divided by formal education (i.e., at least 50% of with no college experience. Our proposed research will overcome a critical barrier to the equitable of basic epigenetics research into clinical and public health practice: limited scientific knowledge how to communicate about epigenetics in way a that is understandable and meaningful to socio- diverse audiences, tha minimizes harmful beliefs, and that includes t he perspectives of populations. Furthermore, our findings could be used as a foundation for research that examines perceptions of other emerging genomics technologies. We will expand our impact further by developing toolkit for disseminating our discoveries. , t

抽象的影响疾病的环境因素可能是通过化学改变调节 DNA 的部分来实现的。基因表达。这些遗传密码的修改被称为“表观遗传学变化”。可以通过接触环境污染物、社会压力或生活方式行为来获得好处或。这些变化的危害取决于基因的目的以及变化如何改变基因表达。沟通促进从遗传的需要帮助人们理解和使用表观遗传信息的策略：(1) 将表观遗传学研究转化为临床环境，(2) 解决潜在的误导性信息大众媒体，以及（3）防止与表观遗传学相关的有害信念的传播，例如我们的目标是消除决定论、本质主义、歧视、种族主义和耻辱。 f 以方便通过可理解和可理解的表观遗传通讯策略开发翻译过程对社会人口多样化的受众有意义，并最大限度地减少有害信念（例如决定论）。具体目标将：（1）确定人们如何理解和解释表观遗传学信息；（2）检查表观遗传学的伦理、法律和社会影响 (ELSI)：(a) 产生或最小化有害 (b) 促进或阻止在临床环境中使用表观遗传学的信念；(3) 确定；以促进对表观遗传学的理解的方式交流表观遗传学信息的策略概念，最大限度地减少有害信念，并提高在临床环境中使用表观遗传学的接受度；以及 (4) 确定种族、民族和正规教育如何影响目标 1-3 的结果我们将使用探索性的方法。序贯混合方法设计，包括一个定性阶段和两个连续的定量阶段定性阶段将包括 20 个焦点小组（总共 160 个，每组 8 个）。各阶段将包括全国代表性的、以人口为基础的调查（N=1,870）和全因素调查测试沟通策略的实验（N=1,954）。的非西班牙裔和参加者翻译关于人口统计学上减民众一个每个阶段的样本，其中包括成员公众将按种族和民族（即西班牙裔、黑人、非西班牙裔白人、非西班牙裔亚洲人、非西班牙裔美洲印第安人、夏威夷原住民、其他太平洋岛民），并按正规教育程度大致平分（即至少 50% 我们提出的研究将克服公平的关键障碍。基础表观遗传学研究在临床和公共卫生实践中的应用：有限的科学知识如何以社会可以理解且有意义的方式交流表观遗传学不同的受众，最大限度地减少有害的信念，其中包括此外，我们的研究结果可以用作检查研究的基础。我们将通过开发进一步扩大我们对其他新兴基因组学技术的看法。传播我们的发现的工具包。 , t