Hart Alexa, Petros Michael, Charrow Joel, Nash Claudia, Wicklund Catherine
Fetal and Neonatal Medicine Center, Rush University Medical Center, 1725 W. Harrison St., Suite 308, Chicago, IL, 60612, USA,
J Genet Couns. 2015 Jun;24(3):482-90. doi: 10.1007/s10897-014-9788-2. Epub 2014 Nov 20.
Storage and use of residual dried blood spots (DBS) from newborn screening (NBS) for research purposes has been a topic of elevated interest following high profile disputes between genetic privacy advocacy groups and state NBS programs. Our objective was to assess public opinion in Illinois regarding storage and use of residual DBS for research. Five hundred twenty-six Illinois residents completed a survey assessing attitudes about research uses for DBS, storage length, and consent issues. Over 80 % of respondents expressed agreement with questions regarding research uses of DBS. Eighty-three percent of respondents were in favor of storage for at least one year with 44 % favoring indefinite storage. Respondents with higher educational attainment were more likely to support research use of DBS and less likely to desire contact for each future study (P < 0.05). Black respondents were less likely than white respondents to express agreement for the use of DBS for research or to favor long-term storage (P < 0.05). Support was high for storage and use of DBS in our sample. Consent was important and respondents wanted choices about participation. Forty-two percent of respondents were not aware of NBS prior to this survey, highlighting a need for greater education about this public health program. Trust in the public health service of NBS must be protected through transparency in the policy process.
在基因隐私倡导组织与州新生儿筛查（NBS）项目之间发生备受瞩目的争议之后，出于研究目的储存和使用新生儿筛查中残留的干血斑（DBS）一直是一个备受关注的话题。我们的目标是评估伊利诺伊州公众对储存和使用残留DBS进行研究的看法。526名伊利诺伊州居民完成了一项调查，评估他们对DBS研究用途、储存时长和同意问题的态度。超过80%的受访者对有关DBS研究用途的问题表示赞同。83%的受访者赞成储存至少一年，44%的受访者赞成无限期储存。受教育程度较高的受访者更有可能支持DBS的研究用途，并且不太希望每次未来研究都与之联系（P<0.05）。黑人受访者比白人受访者更不太可能对将DBS用于研究表示赞同或赞成长期储存（P<0.05）。在我们的样本中，对DBS的储存和使用支持率很高。同意很重要，受访者希望能对参与做出选择。42%的受访者在本次调查之前不了解新生儿筛查，这凸显了对这一公共卫生项目进行更多教育的必要性。必须通过政策过程的透明度来保护公众对新生儿筛查公共卫生服务的信任。
