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PGD: Couples Decision Making at the Genetic and Reproductive Interface

PGD：遗传和生殖界面的结合决策

基本信息

批准号：
7693847
负责人：
PATRICIA HERSHBERGER
金额：
$ 7.85万
依托单位：
UNIVERSITY OF ILLINOIS AT CHICAGO
依托单位国家：
美国
项目类别：
财政年份：
2008
资助国家：
美国
起止时间：
2008-09-26 至 2011-07-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/7693847
关键词：
Adult Advertising Aneuploidy Area Bioethics Consultants Birth Categories Child Childhood Chromosomal Rearrangement Chromosome abnormality Clinic Clinical Complex Consult Consultations Couples Data Data Collection Decision Making Development Disadvantaged Drug Formulations Embryo Ethics Family Female Fertilization in Vitro Frequencies Future Genetic Genetic Markers Genetic Screening Genetic screening method Goals Gossypium Growth Guidelines HLA Antigens Health Policy Hereditary Disease Human Genetics In Vitro Individual Infertility International Internet Intervention Interview Investigation Knowledge Legal Mails Medicine Methods Molecular Genetics Newsletter Nurses Outcome Participant Physicians Policies Politics Population Pregnancy Preimplantation Diagnosis Prenatal Diagnosis Preparation Prevention Procedures Process Professional counselor Public Health Reproduction Reproductive Technology Research Research Design Sampling Sex Chromosomes Sex Preselection Shapes Societies Subgroup Support Groups Techniques Telephone Testing Time Touch sensation United States National Institutes of Health assisted reproduction base clinical practice design disability expectation experience gene therapy genetic technology health disparity implantation innovation leukocyte antigen typing male offspring preference preimplantation psychologic public health relevance reproductive sermons social sound theories web site working group

项目摘要

DESCRIPTION (provided by applicant): Advances in human genetics and assisted reproduction have expanded dramatically and most recently includes the innovative option of Preimplantation Genetic Diagnosis (PGD). This relatively new form of genetic screening circumvents conventional forms of prenatal diagnosis by identifying genetic disorders or chromosomal rearrangements prior to establishing uterine implantation and establishment of pregnancy. Couples where one or both partners are carriers of genetic disorders may benefit from using PGD because they avoid the difficult decision of whether or not to terminate a pregnancy after receiving an unfavorable prenatal diagnosis. Despite this benefit, there are multiple disadvantages of using PGD including the need for in vitro fertilization, potential misdiagnosis, financial expense, potential for supernumerary embryos and confronting fundamental values of disability prevention. Despite these far reaching considerations, little is known about the decision making processes of couples surrounding PGD use. The purpose of this study is to develop an initial theoretical understanding of the decision making process of couples who have recently accepted or declined the use of PGD for childhood genetic disorders and to evaluate and refine recruitment and methodological procedures to prepare for a larger study. Grounded theory design will guide this exploratory study. Recruitment of 20 couples will proceed through three approaches: a large urban infertility center, Internet web sites, and regional newsletters distributed by a nationally recognized support group. Couples, consisting of a male and female dyad, will be interviewed independently from their partner. In-depth, open-ended interviews will be completed with each participant via telephone or e-mail within three months from the time of physician consultation about PGD. Concepts derived from the interviews will be grouped into categories that reflect the meaning in the data that will eventually be integrated to develop the initial theoretical description of this dynamic decision process surrounding PGD use. The findings will also serve to guide the development of a planned larger study that will examine the decision making processes of couples surrounding PGD in more depth and will assist with the formulation of professional guidelines, inform public health policies, and promote understanding in other emerging areas of genetic testing and treatment. PUBLIC HEALTH RELEVANCE: Preimplantation Genetic Diagnosis (PGD) is a critical social and public health issue where our existing views and expectations are challenged regarding the way we think about genetic technology and reproduction. This study will examine the decision making process of couples who have accepted or declined the use of PGD for identifying childhood genetic disorders. The findings will help us understand dyadic decision making when genetic testing and reproductive technology are involved and will guide future research and begin to shape clinical practice, professional guidelines and public health policies.

描述(由申请人提供)：人类遗传学和辅助生殖的进步已经显著扩大，最近包括植入前遗传诊断(PGD)的创新选择。这一相对较新的基因筛查形式绕过了传统的产前诊断形式，在确定子宫植入和怀孕之前确定遗传疾病或染色体重排。一方或双方是遗传病携带者的夫妇可能会从使用PGD中受益，因为他们避免了在接受不利的产前诊断后做出是否终止妊娠的艰难决定。尽管有这样的好处，但使用PGD仍有多个缺点，包括需要体外受精、潜在的误诊、经济费用、可能产生额外胚胎以及面临残疾预防的基本价值。尽管有这些影响深远的考虑，但人们对围绕PGD使用的夫妇的决策过程知之甚少。这项研究的目的是对最近接受或拒绝使用PGD治疗儿童遗传性疾病的夫妇的决策过程进行初步的理论理解，并评估和完善招募和方法学程序，为更大规模的研究做准备。扎根的理论设计将指导本次探索性研究。招募20对夫妇将通过三种方式进行：大型城市不孕不育中心，互联网网站，以及由国家公认的支持组织分发的地区性通讯。由一男一女组成的夫妇将独立于他们的伴侣接受采访。通过电话或电子邮件与每位参与者进行深入的、开放式的访谈将在医生咨询PGD后的三个月内完成。从访谈中得出的概念将被分组，以反映数据中的含义，这些数据最终将被整合，以开发围绕PGD使用的这种动态决策过程的初始理论描述。这些发现还将指导一项计划中的更大规模研究的发展，该研究将更深入地检查围绕PGD的夫妇的决策过程，并将帮助制定专业指南，为公共卫生政策提供信息，并促进对其他新兴基因检测和治疗领域的了解。公共卫生相关性：植入前基因诊断(PGD)是一个关键的社会和公共卫生问题，我们对基因技术和生殖的现有观点和期望受到挑战。这项研究将考察接受或拒绝使用PGD来识别儿童遗传性疾病的夫妇的决策过程。这些发现将帮助我们理解涉及基因测试和生殖技术时的二元决策，并将指导未来的研究，并开始塑造临床实践、专业指南和公共卫生政策。