Direct-to-Consumer Genetic Testing: A Systematic Review of European Guidelines, Recommendations, and Position Statements

被引:28
|
作者
Rafiq, Muhammad [1 ,2 ]
Ianuale, Carolina [3 ]
Ricciardi, Walter [3 ]
Boccia, Stefania [3 ]
机构
[1] Karolinska Inst, Med Management Ctr, Dept Learning Informat Management & Eth LIME, S-17165 Stockholm, Sweden
[2] SDA Bocconi Sch Management, Milan, Italy
[3] Univ Cattolica Sacro Cuore, Inst Publ Hlth, Sect Hyg, Rome, Italy
关键词
CRITICAL-APPRAISAL; RISKS; PERCEPTIONS; DISEASES; QUESTIONS;
D O I
10.1089/gtmb.2015.0051
中图分类号
Q5 [生物化学]; Q7 [分子生物学];
学科分类号
071010 ; 081704 ;
摘要
Background: Personalized healthcare is expected to yield promising results, with a paradigm shift toward more personalization in the practice of medicine. This emerging field has wide-ranging implications for all the stakeholders. Commercial tests in the form of multiplex genetic profiles are currently being provided to consumers, without the physicians' consultation, through the Internet, referred to as direct-to-consumer genetic tests (DTC GT). Objectives: The objective was to review all the existing European guidelines on DTC GT, and its associated interventions, to list all the supposed benefits and harms, issues and concerns, and recommendations. Methods: We conducted a systematic review of position statements, policies, guidelines, and recommendations, produced by professional organizations or other relevant bodies for use of DTC GT in Europe. Results: Seventeen documents met the inclusion criteria, which were subjected to thematic analysis, and the texts were coded for statements related to use of DTC GT. Discussion and Conclusions: Professional societies and associations are currently more suggestive of potential disadvantages of DTC GT, recommending improved genetic literacy of both populations and health professionals, and implementation research on the genetic tests to integrate public health genomics into healthcare systems.
引用
收藏
页码:535 / 547
页数:13
相关论文
共 50 条
  • [1] Direct to consumer genetic testing: a systematic review of position statements, policies and recommendations
    Skirton, H.
    Goldsmith, L.
    Jackson, L.
    O'Connor, A.
    CLINICAL GENETICS, 2012, 82 (03) : 210 - 218
  • [3] European citizens' perspectives on direct-to-consumer genetic testing: an updated systematic review
    Hoxhaj, Ilda
    Stojanovic, Jovana
    Boccia, Stefania
    EUROPEAN JOURNAL OF PUBLIC HEALTH, 2023, 33 (05): : 947 - 953
  • [4] Direct to Consumer Genetic Testing: A Systematic Review of Position Statements, Policies and Recommendations (vol 68, pg 16, 2013)
    Skirton, H.
    Goldsmith, L.
    Jackson, L.
    O'Connor, L. A.
    OBSTETRICAL & GYNECOLOGICAL SURVEY, 2013, 68 (02) : 160 - 162
  • [5] Internet-Based Direct-to-Consumer Genetic Testing: A Systematic Review
    Covolo, Loredana
    Rubinelli, Sara
    Ceretti, Elisabetta
    Gelatti, Umberto
    JOURNAL OF MEDICAL INTERNET RESEARCH, 2015, 17 (12)
  • [6] Direct-to-Consumer Genetic Testing: A Comprehensive Review
    Jiang, Sharon
    Liberti, Lawrence
    Lebo, David
    THERAPEUTIC INNOVATION & REGULATORY SCIENCE, 2023, 57 (6) : 1190 - 1198
  • [7] Direct-to-Consumer Genetic Testing: A Comprehensive Review
    Sharon Jiang
    Lawrence Liberti
    David Lebo
    Therapeutic Innovation & Regulatory Science, 2023, 57 : 1190 - 1198
  • [8] Direct-to-Consumer Genetic Testing
    Bates, Mary
    IEEE PULSE, 2018, 9 (06) : 11 - 14
  • [9] Direct-to-consumer genetic testing
    Henegan, John C., Jr.
    Robin, Nathaniel H.
    CURRENT OPINION IN PEDIATRICS, 2010, 22 (06) : 685 - 686
  • [10] Direct-to-consumer genetic testing
    Cecile, A.
    Janssens, J. W.
    FEBS JOURNAL, 2012, 279 : 325 - 325