TABLE 2
FROM:
Newborn Blood Spot Screening in Four Countries: Stakeholder Involvement
Beth K Potter, Denise Avard and Brenda J Wilson
BACK TO ARTICLETable 2. National governmental organizations: strategies for stakeholder participation used and recommended in newborn screening policy literature
| Strategies used |
| Direct input |
| Multi-stakeholder working groups involved in developing policy (25, 26, 34) |
| Workshops coordinated together with patient associations (11, 35) |
| Meetings with stakeholders to inform policy (public fora, meetings with specific organizations) (58) |
| Consultation |
| Parents and professionals consulted in developing resources (26) |
| Draft policies or documents released for broad consultation (26, 34, 58) |
| Pilot-testing of draft resources (26) |
| Strategies recommended * |
| General need for inclusive policy development, including patient and/or public participation or consultation (35, 36, 58) |
| General need for program/test to be acceptable to health professionals and/or public (24, 25) |
| Need for multi-disciplinary coordinating groups with public representation to manage newborn screening programs (26) |
| Need for newborn screening program standards to be developed together with professional groups (58) |
| Given plurality of views on secondary use of newborn screening blood spot cards, need for standards informed by an "ethics of discussion" approach, to balance ethical considerations from different stakeholder perspectives (58) |
* We did not classify recommended strategies as "direct input," "indirect input," or "consultation," as recommendations tended to be too general for such categorization.
