Jove
Visualize
Contact Us
JoVE
x logofacebook logolinkedin logoyoutube logo
ABOUT JoVE
OverviewLeadershipBlogJoVE Help Center
AUTHORS
Publishing ProcessEditorial BoardScope & PoliciesPeer ReviewFAQSubmit
LIBRARIANS
TestimonialsSubscriptionsAccessResourcesLibrary Advisory BoardFAQ
RESEARCH
JoVE JournalMethods CollectionsJoVE Encyclopedia of ExperimentsArchive
EDUCATION
JoVE CoreJoVE BusinessJoVE Science EducationJoVE Lab ManualFaculty Resource CenterFaculty Site
Terms & Conditions of Use
Privacy Policy
Policies

Related Experiment Videos

Pedigree parables.

R L Bennett1

  • 1Division of Medical Genetics, University of Washington, Seattle 98195-7720, USA. robinb@u.washington.edu

Clinical Genetics
|November 15, 2000
PubMed
Summary
This summary is machine-generated.

Published pedigrees are often altered to protect privacy, but this can obscure genetic patterns. This review explores the balance between genetic subject confidentiality and the need for accurate family data in research.

Related Concept Videos

You might also read

Related Articles

Articles linked to this work by shared authors, journal, and citation graph.

Sort by
Same author

Projecting the Supply and Demand for Certified Genetic Counselors: a Workforce Study.

Journal of genetic counseling·2017
Same author

Audit feedback on reading performance of screening mammograms: An international comparison.

Journal of medical screening·2016
Same author

Development of the Critical Elements of Genetic Evaluation and Genetic Counseling for Genetic Professionals and Perinatologists in Washington State.

Journal of genetic counseling·2015
Same author

Genetic Counseling for Fragile X Syndrome: Recommendations of the National Society of Genetic Counselors.

Journal of genetic counseling·2015
Same author

Cardiovascular safety of the glucagon-like peptide-1 receptor agonist taspoglutide in people with type 2 diabetes: an individual participant data meta-analysis of randomized controlled trials.

Diabetes, obesity & metabolism·2015
Same author

Offering predictive testing for Huntington disease in a medical genetics clinic: Practical applications.

Journal of genetic counseling·2013
Same journal

From Pathogenicity to Mechanism: A Variant Interpretation Framework for Monogenic Epilepsy.

Clinical genetics·2026
Same journal

Biallelic Variants in ATP1A4 Are Associated with Oligoasthenoteratozoospermia and Male Infertility.

Clinical genetics·2026
Same journal

Diagnostic Yield and Clinical Impact of Comprehensive WES/WGS Testing Beyond Common Genetic Causes in Hereditary Optic Atrophy.

Clinical genetics·2026
Same journal

Further Support of Autosomal Recessive CSF3-Related Severe Congenital Neutropenia.

Clinical genetics·2026
Same journal

Biallelic TMEM126B Variants as a Novel Cause of Kidney Failure-Implications for Mitochondrial Genetic Testing in Nephrology: A Response Letter.

Clinical genetics·2026
Same journal

Research Progress on the Pathogenesis and Diagnostic and Therapeutic Potential of Ciliopathies Regulated by IFT172.

Clinical genetics·2026
See all related articles

Area of Science:

  • Human Genetics
  • Genetic Counseling
  • Bioethics

Background:

  • Published pedigrees are crucial for genetic counseling and research.
  • Pedigrees are frequently masked or altered to protect patient and family privacy.
  • Data omission (e.g., age, ethnicity) is also used for confidentiality.

Purpose of the Study:

  • To examine the ethical considerations of altering pedigrees for privacy.
  • To assess the impact of pedigree modifications on recognizing genetic processes.
  • To provide guidance on balancing privacy with data integrity in genetic research.

Main Methods:

  • Historical perspective analysis.
  • Review of case examples.
  • Discussion of ethical dilemmas in genetic research reporting.

Related Experiment Videos

Main Results:

  • Pedigree alterations, while protecting privacy, can hinder the accurate identification of genetic inheritance patterns.
  • The extent to which modifications impact genetic analysis requires careful consideration.
  • There is a need for clear guidelines on essential data for pedigree reporting.

Conclusions:

  • Researchers must critically evaluate the necessity and impact of pedigree modifications.
  • Balancing genetic subject privacy with the scientific value of unaltered family data is essential.
  • Peer reviewers and investigators need frameworks for assessing pedigree data in publications.