Parent perspectives on privacy and governance for a pediatric repository of non-biological, research data

Journal of Empirical Research on Human Research Ethics : JERHRE
Kiran P ManhasSuzanne C Tough

Abstract

Research data repositories (RDRs) are data storage entities where data can be submitted, stored, and subsequently accessed for purposes beyond the original intent. There is little information relating to non-biological RDRs, nor considerations regarding pediatric data storage and re-use. We examined parent perspectives on pediatric, non-biological RDRs. Qualitative, descriptive methods including both interviews and focus groups were used. Purposive sampling of adult participants in two provincial birth cohorts yielded 19 interviewees and 18 focus group participants (4 groups). Transcripts were analyzed by thematic content analysis. Parent research participants strongly supported the sharing of their own, and their child's, non-biological research data. Four themes emerged: that altruism has limits, that participants have ongoing privacy concerns, that some participants need the assurance of congruent values between themselves and researchers/research questions, and that opinions diverge for some governance issues. The establishment of RDRs is important and maximizes participants', researchers', and funders' investments. Participants as data donors have concerns relating to privacy, relationships, and governance that must be con...Continue Reading

References

Apr 1, 1995·Research in Nursing & Health·M Sandelowski
May 1, 1997·The Journal of the American Dental Association
Aug 15, 2000·Research in Nursing & Health·M Sandelowski
Nov 23, 2005·Journal of Wound, Ostomy, and Continence Nursing : Official Publication of the Wound, Ostomy and Continence Nurses Society·Jill Milne, Kathleen Oberle
Nov 3, 2006·Journal of Advanced Nursing·Tim Freeman
Aug 2, 2007·The European Respiratory Journal·A Cambon-ThomsenB M Knoppers
Aug 23, 2007·Journal of the American Medical Informatics Association : JAMIA·Donald J WillisonLehana Thabane
Jan 15, 2008·American Journal of Medical Genetics. Part C, Seminars in Medical Genetics·David KaufmanKathy Hudson
Jan 17, 2008·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Amy L McGuireAlica Goldman
Jan 19, 2008·American Journal of Medical Genetics. Part a·Josh W JosephLainie Friedman Ross
Jan 22, 2008·American Journal of Medical Genetics. Part a·Alon B NeidichLainie Friedman Ross
Jun 19, 2008·Cancer Epidemiology, Biomarkers & Prevention : a Publication of the American Association for Cancer Research, Cosponsored by the American Society of Preventive Oncology·Laura M Beskow, Elizabeth Dean
Nov 13, 2008·The American Journal of Bioethics : AJOB·Sara Chandros HullBenjamin S Wilfond
Nov 18, 2008·Genetics in Medicine : Official Journal of the American College of Medical Genetics·David KaufmanKathy Hudson
Jan 24, 2009·American Journal of Medical Genetics. Part a·K E OrmondW A Wolf
Jul 15, 2009·The Journal of Pediatrics·Aaron J GoldenbergBenjamin S Wilfond
Jul 18, 2009·BMC Medical Research Methodology·Mette Asbjoern NeergaardJens Sondergaard
Oct 20, 2009·American Journal of Medical Genetics. Part a·Mary M JenkinsMargaret A Honein
Nov 3, 2009·American Journal of Human Genetics·David J KaufmanKathy L Hudson
Dec 17, 2009·Research in Nursing & Health·Margarete Sandelowski
Feb 16, 2010·Qualitative Health Research·Jamie MurdochCharlotte Salter
Apr 22, 2010·Qualitative Health Research·David L Morgan
Jun 11, 2010·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Susan Brown TrinidadWylie Burke
Sep 14, 2010·Journal of Empirical Research on Human Research Ethics : JERHRE·Evette J LudmanWylie Burke
Oct 12, 2010·European Journal of Public Health·Christine R CritchleyMark J A Stranger
May 4, 2011·Journal of Paediatrics and Child Health·Julie SamuëlDenise Avard
May 11, 2011·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Christian M SimonBridget Zimmerman
Aug 13, 2011·Human Genetics·Bartha Maria Knoppers, Thomas J Hudson
May 11, 2012·Journal of Medical Ethics·Colin M E Halverson, Lainie Friedman Ross
Jul 19, 2012·Maternal & Child Nutrition·Bonnie J KaplanUNKNOWN APrON Study Team
Nov 28, 2012·AJOB Primary Research·Kyle B Brothers, Ellen Wright Clayton
Mar 6, 2013·BMC Pregnancy and Childbirth·Sheila W McDonaldSuzanne C Tough
Mar 16, 2013·AJOB Primary Research·Susan Brown TrinidadWylie Burke
Oct 2, 2013·American Journal of Community Psychology·UNKNOWN Society for Community Research and Action—Community Psychology, Division 27 of the American Psychological Association
Mar 13, 2014·Pediatrics·Matthew D BursteinChing C Lau

❮ Previous
Next ❯

Citations

Jan 23, 2016·Life Sciences, Society and Policy·Kiran Pohar ManhasSuzanne C Tough
Apr 15, 2018·Journal of Health Services Research & Policy·Nicola HoweElaine McColl
Sep 11, 2020·Journal of Advanced Nursing·Nicky HarrisUNKNOWN Joint Research Group for Together for Short Lives/Association of Paediatric Palliative Medicine
Nov 14, 2018·BMC Medical Informatics and Decision Making·Kiran Pohar ManhasSuzanne C Tough

❮ Previous
Next ❯

Related Concepts

Trending Feeds

COVID-19

Coronaviruses encompass a large family of viruses that cause the common cold as well as more serious diseases, such as the ongoing outbreak of coronavirus disease 2019 (COVID-19; formally known as 2019-nCoV). Coronaviruses can spread from animals to humans; symptoms include fever, cough, shortness of breath, and breathing difficulties; in more severe cases, infection can lead to death. This feed covers recent research on COVID-19.

Blastomycosis

Blastomycosis fungal infections spread through inhaling Blastomyces dermatitidis spores. Discover the latest research on blastomycosis fungal infections here.

Nuclear Pore Complex in ALS/FTD

Alterations in nucleocytoplasmic transport, controlled by the nuclear pore complex, may be involved in the pathomechanism underlying multiple neurodegenerative diseases including Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Here is the latest research on the nuclear pore complex in ALS and FTD.

Applications of Molecular Barcoding

The concept of molecular barcoding is that each original DNA or RNA molecule is attached to a unique sequence barcode. Sequence reads having different barcodes represent different original molecules, while sequence reads having the same barcode are results of PCR duplication from one original molecule. Discover the latest research on molecular barcoding here.

Chronic Fatigue Syndrome

Chronic fatigue syndrome is a disease characterized by unexplained disabling fatigue; the pathology of which is incompletely understood. Discover the latest research on chronic fatigue syndrome here.

Evolution of Pluripotency

Pluripotency refers to the ability of a cell to develop into three primary germ cell layers of the embryo. This feed focuses on the mechanisms that underlie the evolution of pluripotency. Here is the latest research.

Position Effect Variegation

Position Effect Variagation occurs when a gene is inactivated due to its positioning near heterochromatic regions within a chromosome. Discover the latest research on Position Effect Variagation here.

STING Receptor Agonists

Stimulator of IFN genes (STING) are a group of transmembrane proteins that are involved in the induction of type I interferon that is important in the innate immune response. The stimulation of STING has been an active area of research in the treatment of cancer and infectious diseases. Here is the latest research on STING receptor agonists.

Microbicide

Microbicides are products that can be applied to vaginal or rectal mucosal surfaces with the goal of preventing, or at least significantly reducing, the transmission of sexually transmitted infections. Here is the latest research on microbicides.