ReviewProgress in neurobiology2013
Genetic susceptibility testing for neurodegenerative diseases: ethical and practice issues.
Review in Progress in neurobiology, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
24 citing papers in PubMed.
- Just Semantics? How Diagnostic Criteria Influence Physician-Patient Narratives in Alzheimer's Disease.Neuro-degenerative diseases · 2026Article
- Planning for the future following receipt of Alzheimer's disease risk estimate among Latinos in New York City.Journal of Alzheimer's disease : JAD · 2025Article
- Ethical considerations of disclosure of iatrogenic cerebral amyloid angiopathy.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- Presence of chronic morbidities alters skeletal muscle health and amino acid kinetics in mild cognitive impairment.Journal of Alzheimer's disease : JAD · 2025Article
- Iatrogenic cerebral proteinopathies-The dawn of transmissible neurodegeneration? The example of cerebral amyloid angiopathy.Frontiers in neurology · 2025Article
- Sport-related concussion research agenda beyond medical science: culture, ethics, science, policy.Journal of medical ethics · 2024Article
- Apolipoprotein E in Alzheimer's disease trajectories and the next-generation clinical care pathway.Nature neuroscience · 2024Review
- From Recognition to Remedy: The Significance of Biomarkers in Neurodegenerative Disease Pathology.International journal of molecular sciences · 2023Review
- The Role of Genetic Testing for Parkinson's Disease.Current neurology and neuroscience reports · 2021Review
- Disclosing Genetic Risk of Alzheimer's Disease to Cognitively Unimpaired Older Adults: Findings from the Study of Knowledge and Reactions to APOE Testing (SOKRATES II).Journal of Alzheimer's disease : JAD · 2021Article
- Biomarkers in Psychiatry: Ethical Issues.Focus (American Psychiatric Publishing) · 2018Article
- Perspectives on Communicating Biomarker-Based Assessments of Alzheimer's Disease to Cognitively Healthy Individuals.Journal of Alzheimer's disease : JAD · 2018Article
- Do people with multiple sclerosis want to know their prognosis? A UK nationwide study.PloS one · 2018Article
- Ethical issues in neurogenetics.Handbook of clinical neurology · 2018Review
- Integrating Patient Concerns into Parkinson's Disease Management.Current neurology and neuroscience reports · 2017Review
- Familial Creutzfeldt-Jakob Disease: Case report and role of genetic counseling in post mortem testing.Prion · 2016Article
- The genetic landscape of Alzheimer disease: clinical implications and perspectives.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Review
- Was it worth it? Patients' perspectives on the perceived value of genomic-based individualized medicine.Journal of community genetics · 2016Article
- The gen-ethics bowl - an in-class activity combining genetics and bioethics.Journal of microbiology & biology education · 2014Article
- Advances in the Genetics of Parkinson's Disease: A Guide for the Clinician.Movement disorders clinical practice · 2014Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
Abstract
As the genetics of neurodegenerative disease become better understood, opportunities for genetic susceptibility testing for at-risk individuals will increase. Such testing raises important ethical and practice issues related to test access, informed consent, risk estimation and communication, return of results, and policies to prevent genetic discrimination. The advent of direct-to-consumer genetic susceptibility testing for various neurodegenerative disorders (including Alzheimer's disease (AD), Parkinson's disease, and certain prion diseases) means that ethical and practical challenges must be faced not only in traditional research and clinical settings, but also in broader society. This review addresses several topics relevant to the development and implementation of genetic susceptibility tests across research, clinical, and consumer settings; these include appropriate indications for testing, the implications of different methods for disclosing test results, clinical versus personal utility of risk information, psychological and behavioral responses to test results, testing of minors, genetic discrimination, and ethical dilemmas posed by whole-genome sequencing. We also identify future areas of likely growth in the field, including pharmacogenomics and genetic screening for individuals considering or engaged in activities that pose elevated risk of brain injury (e.g., football players, military personnel). APOE gene testing for risk of Alzheimer's disease is used throughout as an instructive case example, drawing upon the authors' experience as investigators in a series of multisite randomized clinical trials that have examined the impact of disclosing APOE genotype status to interested individuals (e.g., first-degree relatives of AD patients, persons with mild cognitive impairment).
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.