title: Mothers' Views on Longer Storage of Neonatal Dried Blood Spots for Specific Secondary Uses.
abstract: BACKGROUND
  Neonatal dried blood spots (DBS) present a wealth of data. Currently, many countries discuss DBS storage, management and use. We collected data in the Netherlands on the awareness and views of an unheard stakeholder: mothers (-to-be).
  
  
  METHODS
  A survey was conducted on an Amsterdam pregnancy fair website in 2011. We included 1,272 women who were pregnant and/or had at least one child ≤5 years old. A descriptive analysis was used to score the awareness of and views on policies regarding the length of storage and secondary use.
  
  
  RESULTS
  18.9% of mothers (n = 1,272) were aware of all five current DBS screening, storage and use policies. The views were positive for all ten potential specific secondary uses. Most support was given to etiology research, while test development by a company was least supported. Extending the DBS storage beyond the 5-year status quo was approved by 67.8% of the respondents, indefinite storage was approved by 54.7%.
  
  
  CONCLUSIONS
  Mothers indicate support of several secondary uses and prolonged storage of DBS but report a low awareness of current storage and secondary use policies. Efforts must be made to involve parents as key stakeholders in DBS policies. This could be achieved through a parent-led advisory structure.
authors.affiliation: Section Community Genetics, Department of Clinical Genetics and EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Sarah R
authors.initials: SR
authors.lastname: van Teeffelen
authors.forename: Conor M W
authors.initials: CM
authors.lastname: Douglas
authors.forename: Carla G
authors.initials: CG
authors.lastname: van El
authors.forename: Stephanie S
authors.initials: SS
authors.lastname: Weinreich
authors.forename: Lidewij
authors.initials: L
authors.lastname: Henneman
authors.forename: Maud
authors.initials: M
authors.lastname: Radstake
authors.forename: Martina C
authors.initials: MC
authors.lastname: Cornel
mesh_terms: D001800:Blood Specimen Collection / Q000941:ethics / Q000379:methods / Q000523:psychology; D002648:Child; D032984:Ethics, Research; D005260:Female; D006801:Humans; D007231:Infant, Newborn; D007258:Informed Consent; D009035:Mothers / Q000523:psychology*; D015997:Neonatal Screening / Q000331:legislation & jurisprudence / Q000379:methods / Q000523:psychology; D009426:Netherlands; D011639:Public Opinion; D011795:Surveys and Questionnaires