Open Research Europe

Part of EU Open Research Repository
Published October 20, 2023 | Version 1
Journal article Open

Parent attitudes towards data sharing in developmental science

Authors/Creators

  • 1. Department of Psychological Sciences, Birkbeck University of London, London, England, UK
  • 2. Department of Forensic and Neurodevelopmental Sciences, King's College London, London, England, UK

Files

openreseurope-3-17830.pdf

Files (3.3 MB)

Name Size Download all
md5:868d3c877b906401b305013983e3c4e4
3.3 MB Preview Download

Additional details

Cites
10.1080/23294515.2018.1505783 (DOI)
10.1109/MC.2018.2381135 (DOI)
10.1089/aut.2020.0014 (DOI)
10.1140/epjst/e2012-01690-3 (DOI)
10.1542/peds.2013-1592 (DOI)
10.3389/fnins.2012.00149 (DOI)
10.1172/JCI131448 (DOI)
10.1111/infa.12182 (DOI)
10.1016/j.appdev.2007.07.001 (DOI)
10.1146/annurev-devpsych-120920-042335 (DOI)
10.1002/icd.2254 (DOI)
10.1002/hbm.25217 (DOI)
10.1007/s10803-016-2708-6 (DOI)
10.1136/medethics-2012-100600 (DOI)
10.1038/nrg.2017.89 (DOI)
10.1016/j.ajhg.2021.02.014 (DOI)
10.1177/13623613221105385 (DOI)
10.1016/j.ejpn.2016.07.007 (DOI)
10.1016/j.infbeh.2019.03.007 (DOI)
10.1371/journal.pbio.1002456 (DOI)
10.1055/s-0041-1726488 (DOI)
10.1016/j.neuron.2010.10.009 (DOI)
10.1038/d41586-019-03574-5 (DOI)
10.1038/s41436-018-0032-6 (DOI)
10.1093/jpepsy/jst048 (DOI)
10.1056/NEJMe1516564 (DOI)
10.1093/ije/dyw029 (DOI)
10.1093/ije/dyl170 (DOI)
10.1177/1556264614564970 (DOI)
10.1186/s40504-016-0034-6 (DOI)
10.1007/s11673-020-09982-x (DOI)
10.1017/pls.2022.4 (DOI)
10.1038/s41467-018-04976-1 (DOI)
10.1002/pd.2910 (DOI)
10.1016/j.jecp.2017.04.017 (DOI)
10.1016/j.dcn.2021.101014 (DOI)
10.1186/s12920-019-0618-0 (DOI)
10.1136/ebmental-2021-300329 (DOI)
10.1111/jcpp.13534 (DOI)
10.1177/1362361314529627 (DOI)
10.3389/fninf.2013.00012 (DOI)
10.1038/nn.3818 (DOI)
10.1080/15265161.2013.767955 (DOI)
10.1159/000362091 (DOI)
10.1038/d41586-021-02602-7 (DOI)
10.7554/eLife.53498 (DOI)
10.1017/S0140525X21000455 (DOI)
10.1001/jamapsychiatry.2020.3803 (DOI)
10.1186/s13690-022-00866-7 (DOI)
10.1038/nrn3113 (DOI)
10.1001/jama.2020.15936 (DOI)
10.31234/osf.io/uaezh (DOI)
10.1038/s10038-020-00894-7 (DOI)

References

  • Antommaria AHM, Brothers KB, Myers JA (2018). Parents' attitudes toward consent and data sharing in biobanks: a multisite experimental survey. AJOB Empir Bioeth. doi:10.1080/23294515.2018.1505783
  • Begum Ali J (2023). Supplemental materials for preprint: Parent attitudes towards data sharing in developmental science.
  • Berghel H (2018). Malice domestic: The Cambridge analytica dystopia. Computer. doi:10.1109/MC.2018.2381135
  • Bottema-Beutel K, Kapp SK, Lester JN (2021). Avoiding ableist language: Suggestions for autism researchers. Autism Adulthood. doi:10.1089/aut.2020.0014
  • Buckingham Shum S, Aberer K, Schmidt A (2012). Towards a global participatory platform: democratising open data, complexity science and collective intelligence. Eur Phys J Spec Top. doi:10.1140/epjst/e2012-01690-3
  • Burstein MD, Robinson JO, Hilsenbeck SG (2014). Pediatric data sharing in genomic research: attitudes and preferences of parents. Pediatrics. doi:10.1542/peds.2013-1592
  • Carp J (2012). On the plurality of (methodological) worlds: estimating the analytic flexibility of FMRI experiments. Front Neurosci. doi:10.3389/fnins.2012.00149
  • (2019). Consent and confidentiality in genomic medicine: Guidance on the use of genetic and genomic information in the clinic.
  • Feldman AM, Mann DL (2019). Restoring public trust in scientific research by reducing conflicts of interest. J Clin Invest. doi:10.1172/JCI131448
  • Frank MC, Bergelson E, Bergmann C (2017). A collaborative approach to infant research: Promoting reproducibility, best practices, and theory‐building. Infancy. doi:10.1111/infa.12182
  • Friedman SL (2007). Finding treasure: Data sharing and secondary analysis in developmental science. J Appl Dev Psychol. doi:10.1016/j.appdev.2007.07.001
  • Gennetian LA, Frank M, Tamis-LeMonda CS (2022). Open Science in developmental science. Annu Rev Dev Psychol. doi:10.1146/annurev-devpsych-120920-042335
  • Gilmore RO, Qian Y (2022). An open developmental science will be more rigorous, robust, and impactful. Infant Child Dev. doi:10.1002/icd.2254
  • Grady CL, Rieck JR, Nichol D (2021). Influence of sample size and analytic approach on stability and interpretation of brain‐behavior correlations in task‐related fMRI data. Hum Brain Mapp. doi:10.1002/hbm.25217
  • Haas K, Costley D, Falkmer M (2016). Factors influencing the research participation of adults with autism spectrum disorders. J Autism Dev Disord. doi:10.1007/s10803-016-2708-6
  • Halverson CM, Ross LF (2012). Attitudes of African-American parents about biobank participation and return of results for themselves and their children. J Med Ethics. doi:10.1136/medethics-2012-100600
  • Hindorff LA, Bonham VL, Brody LC (2018). Prioritizing diversity in human genomics research. Nat Rev Genet. doi:10.1038/nrg.2017.89
  • Hivert V, Sidorenko J, Rohart F (2021). Estimation of non-additive genetic variance in human complex traits from a large sample of unrelated individuals. Am J Hum Genet. doi:10.1016/j.ajhg.2021.02.014
  • Hobson H, Poole D, Pearson A (2022). Opening up autism research: Bringing open research methods to our field. Autism. doi:10.1177/13623613221105385
  • Ismail FY, Fatemi A, Johnston MV (2017). Cerebral plasticity: Windows of opportunity in the developing brain. Eur J Paediatr Neurol. doi:10.1016/j.ejpn.2016.07.007
  • Jones EJ, Mason L, Ali JB (2019). Eurosibs: Towards robust measurement of infant neurocognitive predictors of autism across Europe. Infant Behav Dev. doi:10.1016/j.infbeh.2019.03.007
  • Kapp S (2019). How social deficit models exacerbate the medical model: Autism as case in point. Autism Policy Pract.
  • Kidwell MC, Lazarević LB, Baranski E (2016). Badges to acknowledge open practices: A simple, low-cost, effective method for increasing transparency. PLoS Biol. doi:10.1371/journal.pbio.1002456
  • Kobayashi S, Falcón L, Fraser H (2021). Using open source, open data, and civic technology to address the COVID-19 pandemic and infodemic. Yearb Med Inform. doi:10.1055/s-0041-1726488
  • Lajonchere CM (2010). Changing the landscape of autism research: the autism genetic resource exchange. Neuron. doi:10.1016/j.neuron.2010.10.009
  • Ledford H (2019). Google health-data scandal spooks researchers. Nature. doi:10.1038/d41586-019-03574-5
  • Lee SSJ, Cho MK, Kraft SA (2019). "I don't want to be Henrietta Lacks": diverse patient perspectives on donating biospecimens for precision medicine research. Genet Med. doi:10.1038/s41436-018-0032-6
  • Little TD, Jorgensen TD, Lang KM (2014). On the joys of missing data. J Pediatr Psychol. doi:10.1093/jpepsy/jst048
  • Longo DL, Drazen JM (2016). Data sharing. N Engl J Med. doi:10.1056/NEJMe1516564
  • Magnus P, Birke C, Vejrup K (2016). Cohort profile update: the Norwegian mother and child cohort study (MoBa). Int J Epidemiol. doi:10.1093/ije/dyw029
  • Magnus P, Irgens LM, Haug K (2006). Cohort profile: the Norwegian mother and child cohort study (MoBa). Int J Epidemiol. doi:10.1093/ije/dyl170
  • Manhas KP, Page S, Dodd SX (2015). Parent perspectives on privacy and governance for a pediatric repository of non-biological, research data. J Empir Res Hum Res Ethics. doi:10.1177/1556264614564970
  • Manhas KP, Page S, Dodd SX (2016). Parental perspectives on consent for participation in large-scale, non-biological data repositories. Life Sci Soc Policy. doi:10.1186/s40504-016-0034-6
  • Marks JH (2020). Lessons from corporate influence in the opioid epidemic: toward a norm of separation. J Bioeth Inq. doi:10.1007/s11673-020-09982-x
  • McDermott R (2022). Breaking free: . Politics Life Sci. doi:10.1017/pls.2022.4
  • Milham MP, Craddock RC, Son JJ (2018). Assessment of the impact of shared brain imaging data on the scientific literature. Nat Commun. doi:10.1038/s41467-018-04976-1
  • Natoli JL, Ackerman DL, McDermott S (2012). Prenatal diagnosis of Down syndrome: a systematic review of termination rates (1995– 2011). Prenat Diagn. doi:10.1002/pd.2910
  • Nielsen M, Haun D, Kärtner J (2017). The persistent sampling bias in developmental psychology: A call to action. J Exp Child Psychol. doi:10.1016/j.jecp.2017.04.017
  • Nketia J, Amso D, Brito NH (2021). Towards a more inclusive and equitable developmental cognitive neuroscience. Dev Cogn Neurosci. doi:10.1016/j.dcn.2021.101014
  • Papaz T, Liston E, Zahavich L (2019). Return of genetic and genomic research findings: experience of a pediatric biorepository. BMC Med Genomics. doi:10.1186/s12920-019-0618-0
  • Pavarini G, Yosifova A, Wang K (2022). Data sharing in the age of predictive psychiatry: an adolescent perspective. Evid Based Ment Health. doi:10.1136/ebmental-2021-300329
  • Pellicano E, den Houting J (2022). Annual Research Review: Shifting from 'normal science' to neurodiversity in autism science. J Child Psychol Psychiatry. doi:10.1111/jcpp.13534
  • Pellicano E, Dinsmore A, Charman T (2014). What should autism research focus upon? Community views and priorities from the United Kingdom. Autism. doi:10.1177/1362361314529627
  • Poldrack RA, Barch DM, Mitchell JP (2013). Toward open sharing of task-based fMRI data: the OpenfMRI project. Front Neuroinform. doi:10.3389/fninf.2013.00012
  • Poldrack RA, Gorgolewski KJ (2014). Making big data open: data sharing in neuroimaging. Nat Neurosci. doi:10.1038/nn.3818
  • Rothstein MA, Shoben AB (2013). Does consent bias research?. Am J Bioeth. doi:10.1080/15265161.2013.767955
  • Salvaterra E, Locatelli F, Strazzer S (2014). Paediatric biobanks: opinions, feelings and attitudes of parents towards the specimen donation of their sick children to a hypothetical biobank. Pathobiology. doi:10.1159/000362091
  • Sanderson K (2021). High-profile autism genetics project paused amid backlash. Nature. doi:10.1038/d41586-021-02602-7
  • (2010). Report of a working party of the British Society for Human Genetics.
  • Thompson WH, Wright J, Bissett PG (2020). Meta-research: dataset decay and the problem of sequential analyses on open datasets. eLife. doi:10.7554/eLife.53498
  • Visser I, Bergmann C, Byers-Heinlein K (2022). Improving the generalizability of infant psychological research: The ManyBabies model. Behav Brain Sci. doi:10.1017/S0140525X21000455
  • Volkow ND, Gordon JA, Freund MP (2021). The healthy brain and child development study—shedding light on opioid exposure, COVID-19, and health disparities. JAMA Psychiatry. doi:10.1001/jamapsychiatry.2020.3803
  • Vukovic J, Ivankovic D, Habl C (2022). Enablers and barriers to the secondary use of health data in Europe: general data protection regulation perspective. Arch Public Health. doi:10.1186/s13690-022-00866-7
  • Walsh P, Elsabbagh M, Bolton P (2011). In search of biomarkers for autism: scientific, social and ethical challenges. Nat Rev Neurosci. doi:10.1038/nrn3113
  • Whitaker K, Guest O (2020). # bropenscience is broken science: Kirstie Whitaker and Olivia Guest ask how open 'open science'really is. The Psychologist.
  • Wolinetz CD, Collins FS (2020). Recognition of research participants' need for autonomy: remembering the legacy of Henrietta Lacks. JAMA. doi:10.1001/jama.2020.15936
  • Woods AD, Gerasimova D, Van Dusen B (2021). Best practices for addressing missing data through multiple imputation. doi:10.31234/osf.io/uaezh
  • Yamamoto M, Sakurai K, Mori C (2021). Participant mothers' attitudes toward genetic analysis in a birth cohort study. J Hum Genet. doi:10.1038/s10038-020-00894-7