Autism Beyond Pediatrics: Why Bioethicists Ought to Rethink Consent in Light of Chronicity and Genetic Identity

Perry, Alexandra

doi:10.1111/j.1467-8519.2011.01952.x

Cited by 43 publications

(11 citation statements)

References 6 publications

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“…In the case of severe intellectual disability, the latter approach will be difficult. However, as Alexandra Perry argues, autistic children may grow up to be adults who are able to cope with their autism very well, and who see it as an integral part of their identity [Perry, 2012]. Hence, if parents consent to research that would have as an aim curing or eradicating autism this may clash with the future wishes of the child.…”

Section: Pediatric Research Ethicsmentioning

confidence: 97%

“…With regard to the aim of research to "cure" an individual, Perry mentions the fact that being cured from autism, should this be possible, will change the identity of the (especially adult) individual. She states that this may be undesirable, as autism could be considered an important part of one's identity [Perry, 2012]. In this respect, Walsh et al state that research should focus on those forms of prevention, cure, and amelioration that protect the positive aspects of autism while working against the negative.…”

Section: Autism Researchmentioning

confidence: 98%

“…Moreover, they argue, a large proportion of autistics are unable to participate to the debate due to difficulties with communicating. Some parents organizations actively promote biomedical research, but are heavily criticized by autistic persons (neurodiversity movement), who often fear the eugenic implications of research to find a cure or to enable prevention, as they see autism as a desirable genetic variation [Bumiller, 2009;Perry, 2012]. It has been extensively argued that bioethical conclusions on issues related to disability cannot be solved without input from the affected parties themselves, and that a mere theoretical approach to bioethics is insufficient as such approach cannot lay bare all relevant ethical aspects of a given phenomenon [Scully, 2008].…”

Section: Involvement Of All Partiesmentioning

confidence: 99%

“…Perry questions the limits of parental consent in the light of the genetic identity of the future adult: as autism is chronic, pediatric interventions to test treatments ought to consider the future identity of the individual. She questions whether parents can actually consent to interventions that may influence this adult identity [Perry, 2012].…”

Section: Autism Researchmentioning

confidence: 99%

See 3 more Smart Citations

The ethics of complexity. Genetics and autism, a literature review

Hens

Peeters

Dierickx

2016

American J of Med Genetics Pt B

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It is commonly believed that the etiology of autism is at least partly explained through genetics. Given the complexity of autism and the variability of the autistic phenotype, genetic research and counseling in this field are also complex and associated with specific ethical questions. Although the ethics of autism genetics, especially with regard to reproductive choices, has been widely discussed on the public fora, an in depth philosophical or bioethical reflection on all aspects of the theme seems to be missing. With this literature review we wanted to map the basic questions and answers that exist in the bioethical literature on autism genetics, research, counseling and reproduction, and provide suggestions as to how the discussion can proceed. We found 19 papers that fitted the description of "bioethics literature focusing on autism genetics," and analyzed their content to distill arguments and themes. We concluded that because of the complexity of autism, and the uncertainty with regard to its status, more ethical reflection is needed before definite conclusions and recommendations can be drawn. Moreover, there is a dearth of bioethical empirical studies querying the opinions of all parties, including people with autism themselves. Such empirical bioethical studies should be urgently done before bioethical conclusions regarding the aims and desirability of research into autism genes can be done. Also, fundamental philosophical reflection on concepts of disease should accompany research into the etiology of autism.

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Section: Pediatric Research Ethicsmentioning

confidence: 97%

Section: Autism Researchmentioning

confidence: 98%

Section: Involvement Of All Partiesmentioning

confidence: 99%

Section: Autism Researchmentioning

confidence: 99%

See 2 more Smart Citations

The ethics of complexity. Genetics and autism, a literature review

Hens

Peeters

Dierickx

2016

American J of Med Genetics Pt B

View full text Add to dashboard Cite

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“…Researchers can create individualized visual supports 126 and the option to use or not use them at all 127 . Participants can also use individualized “adaptive technologies” (such as computers with screen readers) 128 . Participants may have idiosyncratic needs such as wearing headphones and verbalizing intrusive thoughts 129 .…”

Section: Research Design Strategiesmentioning

confidence: 99%

Person‐Oriented Research Ethics to Address the Needs of Participants on the Autism Spectrum

Cascio

Weiss

Racine

2020

Ethics & Human Research

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Research ethics scholarship often attends to vulnerability. People with autism may be vulnerable in research, but are also vulnerable to unjust exclusion from participation. Addressing the needs of participants with autism can facilitate inclusion and honor the bioethics principle of respect for persons while accounting for risk and vulnerability. Drawing from a review of the literature and informed by a moral deliberation process involving a task force of stakeholders (including autistic people and parents of autistic people), we use the model of person-oriented research ethics to identify several practical strategies researchers can use to address these needs and foster inclusion. Strategies include using multiple means of communication, addressing the sensory environment, preparing participants in advance, and accounting for social context. These practical strategies are not just methodological or design choices; they are inherently related to ethical issues. Method and design choices fulfill ethical aspirations by facilitating inclusion, reducing discomfort, and focusing on individuals. KEYWORDS human subjects research, vulnerable populations, inclusion in research, autism spectrum, research design, person-oriented research ethics

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Enrolling Children in Clinical Trials for Genetic Neurodevelopmental Conditions: Ethics, Parental Decisions, and Children's Identities

Turbitt

Newson

Biesecker

et al. 2021

Ethics & Human Research

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Knowledge of genetic mechanisms contributing to neurodevelopmental conditions is advancing. This is informing development of new drugs to treat or ameliorate these conditions, through targeting underlying genetic pathways. Drugs are tested in clinical trials, necessitating parents to engage with decisions about whether to enroll their child. In this article, we consider important ethical issues to anticipate as clinical research opportunities in genetic neurodevelopmental conditions arise. For example, genetic pathways targeted by the drugs may interact with valued character and personality traits. It is essential that recruitment and consent processes are optimized for families who will grapple with whether these novel drug treatments interact with their child's personality and authentic identity. We call for focused social science research and further normative analysis so that parents are better supported to make informed choices. Additionally, clinical research regulators should have a sound understanding of the contextual experiences regarding how this population of parents engages with decisions.

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Autism Beyond Pediatrics: Why Bioethicists Ought to Rethink Consent in Light of Chronicity and Genetic Identity

Cited by 43 publications

References 6 publications

The ethics of complexity. Genetics and autism, a literature review

The ethics of complexity. Genetics and autism, a literature review

Person‐Oriented Research Ethics to Address the Needs of Participants on the Autism Spectrum

Enrolling Children in Clinical Trials for Genetic Neurodevelopmental Conditions: Ethics, Parental Decisions, and Children's Identities

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