Mapping an ELSI-integrated translational pathway with cell-free fetal DNA testing

通过无细胞胎儿 DNA 测试绘制 ELSI 整合翻译途径

• 批准号: 9069463
• 负责人: Marsha Mabry Michie
• 金额: $ 24.89万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-08-19 至 2018-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9069463
• 关键词: Adopted; Adoption; Alleles; Amniocentesis; Assisted Reproductive Technology; Bioethics; Blood; Businesses; Case Study; Characteristics; Chromosome abnormality; Clinic; Cohort Studies; Collaborations; Communities; Comparative Study; Complex; Consult; Consultations; DNA; Development; Diagnosis; Discourse analysis; Down Syndrome; Economics; Education; Educational workshop; Ethics; Fetal Cell Research; Future; Genes; Genetic; Genetic Medicine; Genetic Translation; Genetic screening method; Genomics; Goals; Guidelines; Healthcare; Individual; Information Technology; Interview; Laboratories; Lead; Legal; Maps; Medical; Mendelian disorder; Mentors; Methods; Modeling; Mothers; Outcome; Participant; Pathway interactions; Perception; Phase; Play; Pregnancy; Pregnant Women; Process; Public Health; Qualitative Methods; Reading; Research; Research Personnel; Research Project Grants; Rights; Risk; Role; Scientist; Shapes; Spontaneous abortion; Techniques; Technology; Testing; Time; Training; Translation Process; Translational Research; Translations; Travel; Vulnerable Populations; abortion; cell free fetal DNA; clinical application; clinical practice; cost; disability; ethical legal social implication; expectation; experience; fetus cell; forgetting; genetic disorder diagnosis; health equity; improved; innovation; interest; maternal serum; meetings; new technology; pregnant; prenatal; prenatal testing; social; symposium; training project

PROJECT SUMMARY/ABSTRACT The objective of this training and research project is to develop the candidate into an independent and interdisciplinary ELSI researcher, with the ability to intertwine qualitative empirical with normative approaches to issues in genetics and genomics. To accomplish this objective, I have proposed: (1) Training that builds upon my previous education and experience as a qualitative social scientist with additional training in genetics and bioethics; and (2) Research that takes a combined social scientific and bioethical approach to understanding and guiding the translational pathways of new genetic innovations. The proposed training includes coursework, directed readings, seminars and workshops, and the mentored development of an interdisciplinary ELSI research project. The long-term goal of the research project is to map out an ELSI-integrated translational pathway for genetic innovations: building a model of crucial points for, and types of, ELSI guidance throughout these translational processes. The specific Aims of this project are: (1) To follow the unfolding translational pathway of cffDNA testing technology, as a case study in translation processes for genetic innovations; and (2) To map crucial points for ELSI guidance along the translational pathway of genetic innovations. Through individual interviews with stakeholders and observations of meetings and conferences of stakeholders, this mapping project will examine the case of cell-free fetal DNA (cffDNA) testing and the actors and networks that influence its development toward potential clinical applications. Comparing features of this process with those of other translations of genetic innovations, it will identify critical moments, turning points, and intersections at which important decisions shape the unfolding translational pathway. Finally, through collaboration with key stakeholders in cffDNA and non-invasive prenatal testing, a model will be developed that proposes types of ethical and social guidance for these crucial points that would likely be most beneficial.

项目总结/文摘

项目成果

Conflicts of interest in genetic counseling: acknowledging and accepting.

遗传咨询中的利益冲突：承认和接受。

• DOI: 10.1038/gim.2016.216
• 发表时间: 2017
• 期刊: Genetics in medicine : official journal of the American College of Medical Genetics
• 作者: Stoll,KatieA;Mackison,Amanda;Allyse,MeganA;Michie,Marsha
• 通讯作者: Michie,Marsha

Weaponizing Hope: Sources of Hope, Unrealistic Optimism, and Denial.

将希望武器化：希望的来源、不切实际的乐观主义和否认。

• DOI: 10.1080/15265161.2018.1498946
• 发表时间: 2018
• 期刊: The American journal of bioethics : AJOB
• 作者: Michie,Marsha;Allyse,Megan;Stoll,KatieA;Master,Zubin
• 通讯作者: Master,Zubin

"I think we've got too many tests!": Prenatal providers' reflections on ethical and clinical challenges in the practice integration of cell-free DNA screening.

• DOI: 10.1016/j.jemep.2016.07.006
• 发表时间: 2016-07-01
• 期刊: Ethics, medicine, and public health
• 作者: Gammon, B L;Kraft, S A;Allyse, M
• 通讯作者: Allyse, M

Conflicts of interest in genetic counseling: persistent underlying questions.

遗传咨询中的利益冲突：持续存在的潜在问题。

• DOI: 10.1038/gim.2017.235
• 发表时间: 2018
• 期刊: Genetics in medicine : official journal of the American College of Medical Genetics
• 作者: Stoll,KatieA;Mackison,Amanda;Allyse,MeganA;Michie,Marsha
• 通讯作者: Michie,Marsha

Old Questions, New Paradigms: Ethical, Legal, and Social Complications of Noninvasive Prenatal Testing.

• DOI: 10.1080/23294515.2014.993440
• 发表时间: 2015-01-01
• 期刊: AJOB empirical bioethics
• 作者: Michie M;Allyse M
• 通讯作者: Allyse M