Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents

被引：290

作者：

Botkin, Jeffrey R. ^{[1
]}

Belmont, John W. ^{[2
]}

Berg, Jonathan S. ^{[3
]}

Berkman, Benjamin E. ^{[4
]}

Bombard, Yvonne ^{[5
,6
]}

Holm, Ingrid A. ^{[7
]}

Levy, Howard P. ^{[8
]}

Ormond, Kelly E. ^{[9
]}

Saal, Howard M. ^{[10
]}

Spinner, Nancy B. ^{[11
]}

Wilfond, Benjamin S. ^{[12
]}

McInerney, Joseph D. ^{[13
]}

机构：

[1] Univ Utah, Salt Lake City, UT 84112 USA

[2] Baylor Coll Med, Houston, TX 77030 USA

[3] Univ N Carolina, Chapel Hill, NC 27599 USA

[4] NHGRI, Bethesda, MD 20892 USA

[5] Univ Toronto, Toronto, ON M5B 1T8, Canada

[6] St Michaels Hosp, Li Ka Shing Knowledge Inst, Toronto, ON M5B 1W8, Canada

[7] Boston Childrens Hosp, Boston, MA 02115 USA

[8] Johns Hopkins Univ, Baltimore, MD 21205 USA

[9] Stanford Univ, Stanford, CA 94305 USA

[10] Cincinnati Childrens Hosp Med Ctr, Cincinnati, OH 45229 USA

[11] Childrens Hosp Philadelphia, Philadelphia, PA 19104 USA

[12] Seattle Childrens Hosp, Seattle, WA 98101 USA

[13] Amer Soc Human Genet, Bethesda, MD 20814 USA

来源：

AMERICAN JOURNAL OF HUMAN GENETICS | 2015年 / 97卷 / 01期

关键词：

TAY-SACHS-DISEASE; INCIDENTAL FINDINGS; REPRODUCTIVE BENEFIT; CARRIER STATUS; DEVELOPMENTAL-DISABILITIES; PRENATAL-DIAGNOSIS; SCREENING-PROGRAM; CYSTIC-FIBROSIS; CARE; HEALTH;

D O I：

10.1016/j.ajhg.2015.05.022

中图分类号：

Q3 [遗传学];

学科分类号：

071007 ; 090102 ;

摘要：

In 1995, the American Society of Human Genetics (ASHG) and American College of Medical Genetics and Genomics (ACMG) jointly published a statement on genetic testing in children and adolescents. In the past 20 years, much has changed in the field of genetics, including the development of powerful new technologies, new data from genetic research on children and adolescents, and substantial clinical experience. This statement represents current opinion by the ASHG on the ethical, legal, and social issues concerning genetic testing in children. These recommendations are relevant to families, clinicians, and investigators. After a brief review of the 1995 statement and major changes in genetic technologies in recent years, this statement offers points to consider on a broad range of test technologies and their applications in clinical,medicine and research. Recommendations are also made for record and communication issues in this domain and for professional education.

引用

页码：6 / 21

页数：16

共 50 条

[1] POINTS TO CONSIDER - ETHICAL, LEGAL, AND PSYCHOSOCIAL IMPLICATIONS OF GENETIC TESTING IN CHILDREN AND ADOLESCENTS
WILFOND, BS
PELIAS, MZ
KNOPPERS, BM
REILLY, PR
WERTZ, DC
BILLINGS, P
FLEISHER, LD
ROWLEY, P
STROM, C
ZINBERG, R
BOYD, P
CLAYTON, EW
FANOS, J
MARKEL, D
SCHNEIDER, K
[J]. AMERICAN JOURNAL OF HUMAN GENETICS, 1995, 57 (05) : 1233 - 1241
[2] Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents (vol 97, pg 6, 2015)
Botkin, Jeffrey R.
Belmont, John W.
Berg, Jonathan S.
Berkman, Benjamin E.
Bombard, Yvonne
Holm, Ingrid A.
Levy, Howard P.
Ormond, Kelly E.
Saal, Howard M.
Spinner, Nancy B.
Wilfond, Benjamin S.
McInerney, Joseph D.
[J]. AMERICAN JOURNAL OF HUMAN GENETICS, 2015, 97 (03) : 501 - 501
[3] Genetic testing in children: Ethical and social points to consider
Hanson, JW
Thomson, EJ
[J]. PEDIATRIC ANNALS, 2000, 29 (05): : 285 - +
[4] Genetic testing in the workplace: Ethical, legal, and social implications
Brandt-Rauf, PW
Brandt-Rauf, SI
[J]. ANNUAL REVIEW OF PUBLIC HEALTH, 2004, 25 : 139 - 153
[5] Genomic cloud computing: legal and ethical points to consider
Edward S Dove
Yann Joly
Anne-Marie Tassé
Bartha M Knoppers
[J]. European Journal of Human Genetics, 2015, 23 : 1271 - 1278
[6] Genomic cloud computing: legal and ethical points to consider
Dove, Edward S.
Joly, Yann
Tasse, Anne-Marie
Knoppers, Bartha M.
[J]. EUROPEAN JOURNAL OF HUMAN GENETICS, 2015, 23 (10) : 1271 - 1278
[7] Ethical, social and legal implications of genetic testing in liver disease
van Leewen, Dirk J.
Bernat, James L.
[J]. HEPATOLOGY, 2006, 43 (06) : 1195 - 1201
[8] Ethical and legal implications of genetic testing in androgen insensitivity syndrome
Berg, Jonathan S.
French, Shannon L.
McCullough, Laurence B.
Kleppe, Soledad
Sutton, Vernon R.
Gunn, Sheila K.
Karaviti, Lefkothea P.
[J]. JOURNAL OF PEDIATRICS, 2007, 150 (04): : 434 - 438
[9] Genetic testing between private and public interests: ethical and legal implications
Sandor, J.
[J]. EUROPEAN JOURNAL OF PUBLIC HEALTH, 2016, 26
[10] Ordering genetic testing by neurologists: points to consider
Fellner, Avi
Goldberg, Yael
Basel-Salmon, Lina
[J]. JOURNAL OF NEUROLOGY, 2023, 270 (08) : 3714 - 3722

← 1 2 3 4 5 →