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会通过化学改变DNA的部分改变基因表达对遗传代码的修饰称为“表观遗传学” 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得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（1）需要帮助窥视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）地址大众媒体和（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 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的不同受众有意义，并最大程度地减少了有害信念（例如，确定论）。第三个目标将：（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e基因的接受；以一种促进对表观遗传学的理解的方式传达有关形成剂的信息的策略概念，最大程度地减少危害信念，并增加在临床环境中使用表观遗传学；确定种族，种族和正规教育如何塑造目标1-3的结果。顺序混合方法设计，包括一个定性阶段，然后是两个征兵定量阶段。定性阶段将包括20个焦点组（n = 160个，n = 8个阶段将包括一项全国范围内的，基于人群的调查（n = 1,870）和全因素测试沟通策略的经验（n = 1,954）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），大约被正规教育分开（即，至少50％没有大学昂贵。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和有意义的方式进行表观遗传学交流多元化的听众，可以最大程度地减少危害信念，其中包括他的观点人群。对其他新兴基因组技术的看法。用于传播我们发现的工具包。 ,,,, t