Parents' Attitudes Toward Pediatric Genetic Testing for Common Disease Risk

Tercyak, Kenneth P.; Alford, Sharon Hensley; Emmons, Karen M.; Lipkus, Isaac M.; Wilfond, Benjamin S.; McBride, Colleen M.

doi:10.1542/peds.2010-0938

Cited by 69 publications

(95 citation statements)

References 34 publications

(16 reference statements)

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“…The bottom line in the lay public group was when it comes to information with respect to themselves (Daack-Hirsch 2012) or their children; they wanted the option to know about it. A similar finding has been reported in other publications engaging the lay public (Tercyak et al 2011;Townsend et al 2012). Lay public participants also felt that parents were the best recipients and keepers of information pertaining to their children.…”

Section: Discussionsupporting

confidence: 86%

The disclosure of incidental genomic findings: an “ethically important moment” in pediatric research and practice

et al. 2013

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Although there are numerous position papers on the issues and challenges surrounding disclosure of incidental genomic findings involving children, there is very little research. To fill this gap, the purpose of this study was to explore the perspectives of multiple professional (N=103) and public (N=63) stakeholders using both interviews and focus groups. Using qualitative analysis, we identified one overarching theme, "It's hard for us; it's hard for them," and three subthemes/questions: "What to disclose?," "Who gets the information?," and "What happens later?" Perspectives differed between professional (Institutional Review Board chairs, clinicians, and researchers) and public stakeholders. While professionals focused on the complexities of what to disclose, the lay public stated that parents should have all information laid out for them. Professionals pondered multiple parent and child situations, while the public identified parents as informational gatekeepers who know their children best. Professionals described the potential requirement for follow-up over time as a logistical "nightmare," while the public believed that parents have the responsibility for managing their children's health information over time.However, the parent role as gatekeeper was seen as time limited and in need of professional support and backup. Our findings present a case for needed dialogue around what we propose as an "ethically important moment," with the goal of protecting and respecting the viewpoints of all stakeholders when policies regarding children are developed.

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Section: Discussionsupporting

confidence: 86%

The disclosure of incidental genomic findings: an “ethically important moment” in pediatric research and practice

et al. 2013

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“…It is particularly discouraged to use home-kit genetic testing (available for certain diseases) to assess a "risk to develop" a disease (see section below) and notably on children. In addition to the risks of inaccurate results, inaccurate interpretations, potentially harmful interventions and alteration in family dynamics will most likely results from this with negative consequences [12,13]. Furthermore, in the context of PM tests, it is important to get across the message that a test is only valid for a certain time in the course of a disease and only reflect a patient's history up to that point in time (notably taking in consideration previously failed treatment options).…”

Section: Relatives Of Patientsmentioning

confidence: 99%

Questions Posed by the Use of Genetic Information for Personalized Medicine Achievements and Promises

Goulielmos¹,

Zervou²,

Burska³

et al. 2016

J Clin Res Bioeth

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Personalised medicine (PM) has the potential to increase therapeutic effectiveness, reduce side effects and lower cost. The identification of biomarkers predictive of the clinical response to specific treatments in subsets of patients became reality for a variety of diseases. However, a better understanding of the benefits and limitations needs to be developed at the level of the general public as well as at the level of an individual patient. The upcoming ability to characterize each patient from the genetic point of view in a comprehensive manner is believed to have the potential to transform medicine, thus enabling accurate prognosis as well as a treatment outcome prediction. However, PM holds both promise and cause for concern. Although PM promises that an individual's genetic information may be increasingly used to prioritize medical decision making, it raises in parallel fears and questions as to whether such use could be inequitable. Thus, there are many thoughts whether the use of individual genetic information in the delivery of health care can be a cause for concern, as it may lead to genetic discrimination and other problems such as with employers and private insurance companies. Finally, the main pitfall of predictive tests for complex disease remains the putative lack of proven medical benefit. A better understanding of the benefits PM will have to be developed at the level of the general public as well as at the level of an individual patient; which will also reassure people that their genetic data is used appropriately to choose therapeutic protocols and drugs.

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“…11 The potential psychological impacts, along with concerns regarding family planning, fertility, lifestyle choices and health management, 5,12 indicate individualized management and genetic counseling should remain a priority. 3,10 A large body of research has investigated public [13][14][15][16][17] and patient 1,3,[18][19][20][21][22] perceptions of genetic testing, and reported that despite low levels of understanding, perceived benefits outweigh the risks. Patients' most highly-rated benefits include increased knowledge, better outcomes, and more effective prevention strategies.…”

Section: Introductionmentioning

confidence: 99%

“…Patients' most highly-rated benefits include increased knowledge, better outcomes, and more effective prevention strategies. 3,13,15,18,20,22 …”

Section: Introductionmentioning

confidence: 99%

Genetic testing for the risk of developing late effects among survivors of childhood cancer: Consumer understanding, acceptance, and willingness to pay

Georgiou

Wakefield

McGill

et al. 2016

Cancer

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BACKGROUND Genetic testing to determine cancer survivors' risk of developing late effects from their cancer treatment will be increasingly used in survivorship care. This 2‐stage study with 64 survivors of childhood cancer and their parents investigated the preferences and acceptability of testing among those who may be at risk of developing late effects. METHODS The first stage (Stage 1) identified the most commonly perceived benefits and concerns regarding genetic testing for the risk of late effects among 24 participants. In Stage 2, during interviews, 20 survivors (55% of whom were female; mean age, 26.0 years [range, 18‐39 years]; standard deviation [SD], 0.80) and 20 parents (55% of whom were male; mean age of child survivor, 14.2 years [range, 10‐19 years]; SD, 0.79) rated the 7 most common benefits and concerns from those identified in Stage 1. Interviews were transcribed verbatim and analyzed. Decisional balance ratios were calculated by dividing the participants' average concerns scores with the average benefits scores. RESULTS Genetic testing for late effects was highly acceptable: 95% of participants leaned toward testing, and the majority (65.9%) would pay up to Australian $5000. The majority (97.2%) reported it was acceptable to wait for up to 6 months to receive results, and to be offered testing immediately after treatment or when the survivor reached adulthood (62.9%). Survivors and parents had a highly positive decisional balance (Mean (M), 0.5 [SD, 0.38] and M, 0.5 [SD, 0.39], respectively), indicating that perceived benefits outweighed concerns. CONCLUSIONS Although to our knowledge clinical efficacy has yet to be clearly demonstrated, survivors and parents described positive interest in genetic testing for the risk of developing late effects. Perceived benefits outweighed harms, and the majority of participants would be willing to pay, and wait, for testing. Cancer 2016. © 2016 American Cancer Society. Cancer 2016;122:2876–2885. © 2016 American Cancer Society

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Parents' Attitudes Toward Pediatric Genetic Testing for Common Disease Risk

Abstract: As genetic susceptibility testing for common, adult-onset health conditions proliferates, pediatricians should anticipate parents' interest in testing children and be prepared to facilitate informed decision making about such testing.

Cited by 69 publications

References 34 publications

The disclosure of incidental genomic findings: an “ethically important moment” in pediatric research and practice

The disclosure of incidental genomic findings: an “ethically important moment” in pediatric research and practice

Questions Posed by the Use of Genetic Information for Personalized Medicine Achievements and Promises

Genetic testing for the risk of developing late effects among survivors of childhood cancer: Consumer understanding, acceptance, and willingness to pay

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