David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
Learn more about PhilPapers
Journal of Bioethical Inquiry 9 (2):189-193 (2012)
ObjectiveTo investigate the attitudes of Chinese parents regarding the storage of dried blood spots collected for newborn screening (NBS) and their use in research.MethodsWe conducted a hospital-based survey of parents and examined parental attitudes regarding (a) allowing NBS sample storage, (b) permitting use of children’s NBS samples for research with parental permission, and (c) permitting use of children’s NBS samples for research without parental permission.ResultsThe response rate was 52 percent. Of parents surveyed, 68 percent would permit their infant’s NBS sample to be stored for at least some length of time. If permission is obtained, 69 percent of parents “strongly agreed” or “agreed” to permit use of the NBS sample for research. If permission is not obtained, only 14 percent of parents “strongly agreed” or “agreed.” There was no significant association between permitting use of NBS samples for research and parental gender, education, household income, number of children, or site of residence.ConclusionsThis is the first survey of Chinese parents regarding the use of NBS samples for different types of research, with results indicating that most parents would permit their infant’s sample to be stored and would support the use of NBS dried blood spots for research purposes
|Keywords||Newborn screening Dried blood spots Storage Research Parents|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
Denise Chrysler, Harry McGee, Janice Bach, Ed Goldman & Peter D. Jacobson (2011). The Michigan BioTrust for Health: Using Dried Bloodspots for Research to Benefit the Community While Respecting the Individual. Journal of Law, Medicine & Ethics 39 (s1):98-101.
Ellen Wright Clayton (2010). Currents in Contemporary Ethics. Journal of Law, Medicine & Ethics 38 (3):697-700.
Citations of this work BETA
Michael A. Ashby & Leigh E. Rich (2012). Signposts in a Familiar Land? Journal of Bioethical Inquiry 9 (2):119-124.
Similar books and articles
Lainie Friedman Ross (2010). Mandatory Versus Voluntary Consent for Newborn Screening? Kennedy Institute of Ethics Journal 20 (4):299-328.
Zhen Cai (2012). He, Huaihong 何懷宏, Hereditary Society 世襲社會. Beijing 北京: Peking University Press, 北京大學出版社, 2011, 246 Pages; and Selection Society 選舉社會. Beijing 北京: Peking University Press, 北京大學出版社, 2011, 372 Pages. [REVIEW] Dao: A Journal of Comparative Philosophy 11 (2):247-252.
Miguel Ruiz-Canela, Cristina Lopez-del Burgo, Silvia Carlos, Maria Calatrava, Carlos Beltramo, Alfonso Osorio & Jokin de Irala (2013). Observational Research with Adolescents: A Framework for the Management of the Parental Permission. [REVIEW] BMC Medical Ethics 14 (1):2-.
Claudia Wiesemann (2009). Off-Label, Off-Limits? Parental Awareness and Attitudes Towards Off-Label Use in Paediatrics. European Journal of Pediatrics 168:1473-1478.
Victoria A. Miller, William W. Reynolds & Robert M. Nelson (2008). Parent-Child Roles in Decision Making About Medical Research. Ethics and Behavior 18 (2 & 3):161 – 181.
S. G. Nicholls (2010). Knowledge or Understanding? Informed Choice in the Context of Newborn Bloodspot Screening. Public Health Ethics 3 (2):128-136.
Elizabeth Li (2012). Wang, Kai 王楷, Naturalistic Human Nature and Cultivation of the Self: The Spirit of Xunzi's Virtue Philosophy 天然與修為—荀子道德哲學的精神. Beijing 北京: Peking University Press, 2011, 206 Pages. [REVIEW] Dao: A Journal of Comparative Philosophy 11 (1):115-118.
Li En-Chang (2008). Bioethics in China. Bioethics 22 (8):448-454.
Conrad V. Fernandez, Darcy Santor, Charles Weijer, Caron Strahlendorf, Albert Moghrabi, Rebecca Pentz, Jun Gao & Eric Kodish, The Return of Research Results to Participants: Pilot Questionnaire of Adolescents and Parents of Children with Cancer.
Georges Enderle & Qibin Niu (2012). Discerning Ethical Challenges for Marketing in China. Asian Journal of Business Ethics 1 (2):143 - 162.
Jérémy Vanhelst, Ludovic Hardy, Dina Bert, Stéphane Duhem, Stéphanie Coopman, Christian Libersa, Dominique Deplanque, Frédéric Gottrand & Laurent Béghin (2013). Effect of Child Health Status on Parents' Allowing Children to Participate in Pediatric Research. BMC Medical Ethics 14 (1):7.
Aaron Rizzieri (2012). Stem Cell Research on Embryonic Persons Is Just. Journal of Bioethical Inquiry (Browse Results) 9 (2):195-203.
Cheryl M. Sterling & Gary A. Walco (2003). Protection of Children's Rights to Self-Determination in Research. Ethics and Behavior 13 (3):237 – 247.
Kate Read, Conrad Vincent Fernandez, Jun Gao, Caron Strahlendorf, Albert Moghrabi, Rebecca Davis Pentz, Raymond Carlton Barfield, Justin Nathaniel Baker, Darcy Santor, Charles Weijer & Eric Kodish, Decision-Making by Adolescents and Parents of Children with Cancer Regarding Health Research Participation.
T. M. Wilkinson (2001). Parental Consent and the Use of Dead Children's Bodies. Kennedy Institute of Ethics Journal 11 (4):337-358.
Added to index2012-03-24
Total downloads10 ( #215,417 of 1,699,639 )
Recent downloads (6 months)5 ( #128,702 of 1,699,639 )
How can I increase my downloads?