Attitudes Toward Genetic Counseling and Prenatal Diagnosis Among a Group of Individuals with Physical Disabilities

Abstract

Few studies have been published on the attitudes of people with physical disabilities toward genetic counseling and prenatal diagnosis. Articles in the lay press and social science literature on this topic, mainly written by disability rights activists and advocates, imply opposition to prenatal diagnosis and the field of clinical genetics by the physically disabled population. In this study, 15 adults with physical disabilities were interviewed regarding their attitudes toward genetic counseling and prenatal diagnosis. Genetic counseling and prenatal diagnosis were generally viewed favorably by this sample of the disability community. Only a small percentage of the sample perceived genetics to be eugenic. Implications for genetic counseling and future research are discussed.

Impairment Experiences, Identity and Attitudes Towards Genetic Screening: the Views of People with Spinal Muscular Atrophy

“…While family members are an important stakeholder group in debates around genetic screening in their own right, people with genetic conditions have unique experiential knowledge of the condition in question and are set to affected by population genetic screening in very specific ways (Chen and Schiffman 2000; Allyse et al 2015). Therefore, the views of this group of adults was considered worthy of a separate and focused analysis.…”

“…Barter et al 2016; Benjamin et al 1993; Middleton et al 1998; Stern et al 2002) and others revealing far more supportive and accepting attitudes (Chen and Schiffman 2000). This strong diversity of views is perhaps unsurprising given the heterogeneity of adults with genetic disabilities, both in terms of the nature of their conditions, but also in terms of the way(s) they are experienced in everyday life.…”

Genetic Counselling for Familial Conditions during Pregnancy: A Review of the Literature Published during the Years 1989–2004

“…Most of the selected studies were essentially descriptive in nature (see table 1). In the research papers, data were collected by self-report, including self-created data collection forms in nine studies [17,18,19,20,21,22,23,24,25] and semi-structured interviews in five studies [26,27,28,29,30] and by studying medical records in six studies [31,32,33,34,35,36]. Furthermore, we included seven literature reviews [37,38,39,40,41,42,43], six case reports [44,45,46,47,48,49] and one study, in which a mathematical model was used [50].…”

“…Most papers, however, reported a generally favourable view towards these issues among both lay people and professional health workers [18, 19,21,22,23,24, 26]. …”

Is preparation a good reason for prenatal genetic testing? Ethical and critical questions

“…Second, preparation may refer to social and informational support, such as interacting with patient support groups, meeting other families affected by the condition, and gathering information about prognosis and quality of life (Benn & Chapman, 2010;Bratt, Järvholm, Ekman-Joelsson, Mattson, & Mellander, 2015;Helm et al, 1998;Lewis et al, 2014;Nelson Goff et al, 2013). Third, preparation may refer to psychological "coping" or adjustments to the reality of raising a child with a genetic condition: these adjustments may include grieving for the loss of the child that parents expected and incorporating new genetic information into a revised vision for the family's future (Bingham, Correa, & Huber, 2012;Chen & Schiffman, 2000;Fonda Allen & Mulhauser, 1995;Glidden, Billings, & Jobe, 2006;Hickerton, Aitken, Hodgson, & Delatycki, 2012;Markens et al, 2010;McCoyd, 2008;Natoli et al, 2012;Statham, Solomou, & Chitty, 2000;Zuskar, 1987). These meanings and activities intersect and influence one another (Skinner, Edge, Altman, & Sherwood, 2003) and form a foundation for postnatal family adaptation (Bailey, 2007), but they are rarely parsed out in studies examining the impact of prenatal diagnosis (Kalfoglou, Suthers, Scott, & Hudson, 2004;Sandelowski & Barroso, 2005;Sheets, Best, Brasington, & Will, 2011;Sheets, Crissman, et al, 2011).…”