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：
10523912
负责人：
Erika A Waters
金额：
$ 62.65万
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/10523912
关键词：
Address Affect American Indians Asian Asian Americans 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 Ethnic Origin Ethnic group Exposure to Focus Groups Fostering Foundations Gene Expression General Population Generations Genes Genetic Genetic Code Genetic Determinism Genomics Health Hispanic Inherited Knowledge Life Style Link Mass Media Methods Misinformation Modification Molecular Native Hawaiian Native Hawaiian or Other Pacific Islander Not Hispanic or Latino Pacific Islander 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 base clinical application clinical practice clinical translation college design epigenomics essentialism ethical legal social implication experience experimental study genetic approach health care availability health disparity health inequalities marginalized population member news novel therapeutics perceived discrimination population based practical application prevent 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以通过化学改变DNA调节的部分基因表达。这些对遗传密码的修改称为“表观遗传学”。表观遗传变化可以通过暴露于环境污染物，社会压力或生活方式行为来获取。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遗传表达。沟通促进从遗传需要（1）需要帮助人们理解和使用表观遗传信息的策略翻译o表观遗传学研究到临床环境，（2）解决潜在的误导信息大众媒体和（3）防止与表观遗传学相关的有害信念的传播，例如确定性，本质主义，歧视，种族主义和污名。我们的目标是 f 促进通过制定易于理解的表观遗传沟通策略的翻译过程对社会人口统计学上不同的受众有意义，并最大程度地减少了有害信念（例如，确定）。具体目的将：（1）确定人们如何理解和解释表观遗传学信息；（2）检查表观遗传学的道德，法律和社会影响（ELSI）（a）创建或最小化有害信念和（b）促进或劝阻在临床环境中使用表观遗传学的接受；（3）识别以一种促进对表观遗传学的理解的方式传达有关表观遗传学信息的策略概念，最大程度地减少有害信念，并增加对在临床环境中使用表观遗传学的接受；（4）确定种族，种族和正规教育如何塑造目标1-3的结果。我们将使用探索性顺序混合方法设计，包括一个定性阶段，然后是两个连续定量阶段。定性阶段将包括20个焦点组（n = 160个，每组n = 8）。定量阶段将包括一项全国代表性的，基于人群的调查（n = 1,870）和全因素测试沟通策略的实验（n = 1,954）。这的非西班牙裔和参与者翻译关于人口统计学边缘化民众一个每个阶段的样本，包括成员公众将被分层为种族和种族（即西班牙裔，黑色，非西班牙裔白人，非西班牙裔亚洲人，非西班牙裔美国人印第安人，夏威夷人，其他太平洋岛民），大约通过正规教育（即，至少50％没有大学经验。我们拟议的研究将克服对公平的关键障碍临床和公共卫生实践的基本表观遗传学研究：有限的科学知识如何以对社会可以理解且有意义的方式传达表观遗传学多元化的受众，使有害信念最小化，其中包括人群。此外，我们的发现可以用作研究的基础对其他新兴基因组技术的看法。我们将通过发展进一步扩大影响用于传播我们发现的工具包。，，，， t