Ethical Issues in Genetic Testing of Children

Ross, Lainie Friedman; Moon, Margaret

doi:10.1001/archpedi.154.9.873

Cited by 66 publications

(51 citation statements)

References 41 publications

(31 reference statements)

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“…When research involves children (for example, ABIS, the ALSPAC (Avon Longitudinal Study of Parents and Children in UK, the ongoing TRIGR and PRODIA studies, etc), we also have to take into account the need to promote and protect the interests of the children involved in such research. 8,19,30 Generally, the involvement of children in research is continuously debated and it is often argued that risk assessments and methods to secure valid consents from participating families are essential in securing ethically sound research on children. 7,11,12 The trend is to add more weight to children's decision-making capacity and growing autonomy, which is also emphasised in international guidelines of later date.…”

Section: Discussionmentioning

confidence: 99%

Information and informed consent in a longitudinal screening involving children: a questionnaire survey

et al. 2004

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This empirical study explores participants' perceptions of information and understanding of their children's and their own involvement in a longitudinal screening, the ABIS Study. ABIS (All Babies In Southeast Sweden) is a multicentre, longitudinal research screening for Type 1 diabetes and multifactorial diseases involving 17 005 children and their families. For this study, a random selection of mothers was made, using perinatal questionnaire serial numbers from the ABIS study. In total, 293 of these mothers completed an anonymous questionnaire (response rate 73.3%). Our findings from the questionnaire indicate a marked difference between the reported satisfaction with and understanding of the information provided on the one hand and the significant lack of knowledge of some of the aims and methods of the ABIS screening on the other, namely concerning high-risk identification of involved children, potential prevention and future questionnaires. Two questions evoked by our results are: (1) what information is required for participants in longitudinal studies involving children? and (2) how do we ensure and sustain understanding, and thus in a prolonging, informed consent in these studies? This study underlines the importance of an increased understanding of the ethical issues that longitudinal research on children raise and the need to discuss how information and informed consent strategies should be analysed and designed in longitudinal studies.

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Section: Discussionmentioning

confidence: 99%

Information and informed consent in a longitudinal screening involving children: a questionnaire survey

et al. 2004

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“…Most discussion and literature about testing minors for carrier status reflects on the balance of potential benefits and burdens, such as emotional relief, informed life planning, negative self-image, and loss of autonomy. [1][2][3][4][5][6][7][8] These benefits and burdens of carrier testing are often related to psychosocial concerns and are thus subjective, making them difficult to compare. 1 In an effort to address how to balance the implications involved in testing a minor for carrier status, several professional health care organizations developed guidelines in this area.…”

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confidence: 99%

Genetic service providers' practices and attitudes regarding adolescent genetic testing for carrier status

Multhaupt‐Buell

Lovell

Mills

et al. 2007

Genetics in Medicine

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Purpose: To characterize current practices and attitudes regarding testing adolescents for carrier status. Methods:Electronic survey of 294 genetic service providers from various professional organizations. Testing for predisposition and presymptomatic conditions was excluded from this study. Results: Eighty-three percent of providers had received requests to test adolescents for carrier status. Of these, 84% have performed testing. Providers cited adolescent desire, sexual activity/pregnancy, and adolescent competence as the main reasons for testing. Some providers who performed testing found the current guidelines unhelpful. Conclusion: Testing adolescents for carrier status is common for at least some conditions. The guidelines regarding genetic testing of adolescents may need to be updated to reflect current concerns and practices. Genet Med 2007:9(2):101-107.

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“…In der Literatur zur Ethik von GU bei Kindern [4,[10][11][12][13][14][15][16] wurden hauptsächlich drei Arten von Problemen genannt, die dafür sprechen, bei Tests, die nicht zur Verbesserung der medizinischen Behandlung des Kindes selbst notwendig sind, äusserste Zurückhaltung zu üben und entsprechende Begehren von Eltern im Prinzip abzulehnen. …”

Section: Vier Ethische Gründe Zur Vorsichtunclassified

Genetische Untersuchungen bei Kindern: einige ethische Aspekte

2004

Schweiz Ärzteztg

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Ethical Issues in Genetic Testing of Children

Cited by 66 publications

References 41 publications

Information and informed consent in a longitudinal screening involving children: a questionnaire survey

Information and informed consent in a longitudinal screening involving children: a questionnaire survey

Genetic service providers' practices and attitudes regarding adolescent genetic testing for carrier status

Genetische Untersuchungen bei Kindern: einige ethische Aspekte

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