Review
Conceptualizing couples’ decision making in PGD: Emerging cognitive, emotional, and moral dimensions

https://doi.org/10.1016/j.pec.2009.11.017Get rights and content

Abstract

Objective

To illuminate and synthesize what is known about the underlying decision making processes surrounding couples’ preimplantation genetic diagnosis (PGD) use or disuse and to formulate an initial conceptual framework that can guide future research and practice.

Methods

This systematic review targeted empirical studies published in English from 1990 to 2008 that examined the decision making process of couples or individual partners that had used, were eligible for, or had contemplated PGD. Sixteen studies met the eligibility requirements. To provide a more comprehensive review, empirical studies that examined healthcare professionals’ perceptions of couples’ decision making surrounding PGD use and key publications from a variety of disciplines supplemented the analysis.

Results

The conceptual framework formulated from the review demonstrates that couples’ PGD decision making is composed of three iterative and dynamic dimensions: cognitive appraisals, emotional responses, and moral judgments.

Conclusion

Couples think critically about uncertain and probabilistic information, grapple with conflicting emotions, and incorporate moral perspectives into their decision making about whether or not to use PGD.

Practice implications

The quality of care and decisional support for couples who are contemplating PGD use can be improved by incorporating focused questions and discussion from each of the dimensions into counseling sessions.

Introduction

In 1990, groundbreaking reports surfaced from London [1] and Chicago [2] that outlined the procedures for diagnosing genetic disorders in human embryos or oocytes in vitro. The London scientists also reported healthy pregnancies following their procedures, now known as Preimplantation Genetic Diagnosis or PGD, making this novel approach a valid option. In the next 12 years, about 1000 babies were born using PGD [3], [4]. In recent years, the use of PGD sharply increased; over 600 babies were born worldwide in a 1-year period alone [5].

As the knowledge and techniques of molecular genetics continue to evolve, so does the use and applications for PGD. In 1992, PGD was introduced as a way to identify single gene disorders [6]. PGD is now used to test embryos for more than 50 genetic conditions [5]. This number may be much higher as several predominant private laboratories have reported testing embryos for more than 150 genetic conditions on their Internet web sites [7], [8]. Other applications for PGD include the selection of embryos according to their human leukocyte antigen (HLA) type in order to treat an ill sibling [9] and identifying sex chromosomes for non-medical sex selection. The number of requests for PGD for different genetic applications continues to grow, driving a need for highly technical skills and reliable procedures for any given genetic disorder [10], [11], [12], [13]. Recently, there has been a trend towards using PGD for adult-onset inherited predispositions [14], [15] including Alzheimer disease [16] and familial adenomatous polyposis coli [17], foreshadowing the potential expansion of PGD to other applications.

As the applications for PGD expanded, it developed an application for screening purposes, currently referred to as preimplantation genetic screening. In this instance, embryos are assessed for chromosome aneuploidies (i.e. too many or too few chromosomes) to enhance the chance of establishing an ongoing pregnancy. While initially thought to improve the pregnancy success rate, current research has challenged the benefit of preimplantation genetic screening [18], [19], prompting some professional organizations to recommend against preimplantation genetic screening for women with advanced maternal age, previous implantation failure, or recurrent pregnancy loss [20].

Since the inception of PGD, there has been a call for research that addresses the impact of this new and rapidly developing technology that alters the basic human elements of reproduction and genetics. Scholars from a variety of disciplines suggest that it is essential to understand how the merging of genetic and reproductive advances affect the lives of individuals, couples, families, and society [21], [22], [23]. Moreover, specific efforts aimed at understanding the decision making process facing couples contemplating this burgeoning technology will be beneficial to both scientists and clinicians as they attempt to understand and provide accurate and relevant information as well as decisional support [24], [25], [26], [27].

Understanding couples’ decision making surrounding the use of PGD is supported by professional practice groups that have developed guidelines recommending adequate patient counseling and informed consent for PGD [20], [28], [29]. Decision making surrounding PGD also provides an important real world opportunity for understanding naturalistic decision making among couples [30] since PGD is inherently dependent upon both male (sperm) and female (oocyte) gamete contributions. Furthermore, leaders in medical decision making have strongly encouraged investigators to undertake the long, tedious, and often difficult task of understanding decision making as it occurs in natural settings to acquire conceptual knowledge [30]. Therefore, the purpose of this review of published scientific and bioethical literature is to illuminate and synthesize what is known about the underlying decision making processes surrounding couples’ PGD use or disuse and to formulate a conceptual framework derived from the literature that identifies the essential dimensions of couples’ decision making.

Section snippets

Methods

This systematic review targeted empirical studies published in English from 1990 to 2008 that examined aspects of the decision making process of couples or individual partners that had used, were eligible for, or had contemplated PGD. Several search strategies were used to identify relevant literature including computerized searches of electronic databases (i.e. ERIC, ISI Web of Knowledge, PsycINFO, PubMed), ancestry approaches, and citation index searching [31]. Sixteen published research

Results

Three critical dimensions of PGD decision making emerged from our review: (1) cognitive appraisals, (2) emotional responses, and (3) moral judgments. Fig. 1 depicts this conceptual framework. In this article, each dimension is described separately; however, we caution that the dimensions are not mutually exclusive and fixed but rather are iterative and dynamic. We also acknowledge there may exist other factors involved in decision making beyond the scope of this review, such as couples’

Discussion

The ethos of couples’ decision making surrounding PGD use or disuse stems from three interrelated and dynamic dimensions: cognitive appraisals, emotional responses, and moral judgments. Couples are challenged to think critically about uncertain and probabilistic information regarding the PGD procedure and health risks, grapple with positive and negative emotions, and incorporate personal and societal moral views into their decision making processes. Ultimately, couples must decide what they

Acknowledgments

We are grateful for the support provided by the National Institutes of Health (NIH), grant numbers T32 NR07074, R03 NR010351 and K12 HD055892. The review and conceptualization presented here are the authors’ interpretations and do not necessarily represent the official views of the NIH. We would also like to acknowledge and thank the attendees of the 2008 Society for Judgment and Decision Making Conference, the Council for the Advancement of Nursing Science Meeting in 2008, and the 9th

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