-
1
-
-
84875546629
-
-
Washington, DC: U. S. Department of Health and Human Services
-
Presidential Commission for the Study of Bioethical Issues. Safeguarding Children: Pediatric Medical Countermeasure Research. Washington, DC: U. S. Department of Health and Human Services, 2013, p. 26.
-
(2013)
Safeguarding Children: Pediatric Medical Countermeasure Research
, pp. 26
-
-
-
2
-
-
84967274275
-
-
Geneva: Council for International Organizations of Medical Sciences, guidelines 4 and 6
-
For example, see Council for International Organizations of Medical Sciences. International Ethical Guidelines for Biomedical Research Involving Human Subjects. Geneva: Council for International Organizations of Medical Sciences, 2002, guidelines 4 and 6;
-
(2002)
International Ethical Guidelines for Biomedical Research Involving Human Subjects
-
-
-
4
-
-
36048934955
-
Competent children? Minors' consent to health care treatment and research
-
Alderson P. Competent children? Minors' consent to health care treatment and research. Social Science and Medicine 2007;65(ll):2272-2283.
-
(2007)
Social Science and Medicine
, vol.65
, Issue.11
, pp. 2272-2283
-
-
Alderson, P.1
-
5
-
-
85043557937
-
-
L. R. Q. c. C
-
Quebec. Civil Code of Quebec, L. R. Q. c. C-1991. art. 21, al. 5.
-
(1991)
Civil Code of Quebec
, pp. 5
-
-
-
6
-
-
85012215606
-
-
Regulations on medical research involving human Subjects, 1 March, unofficial translation
-
The Netherlands, Amended Medicinal Research involving Human Subjects Act (Regulations on medical research involving human Subjects, 1 March 2006), S.-4-5 [unofficial translation];
-
(2006)
Amended Medicinal Research Involving Human Subjects Act
, pp. S4-S5
-
-
-
7
-
-
85051889729
-
-
18
-
see also Norway. Lov om medisinsk og helsefaglig forskning (helseforskningsloven) [the Health Research Act], 20. 6. Nr. 44 2008. § 17 and 18.
-
(2008)
The Health Research Act
, vol.6-20
, Issue.44
, pp. 17
-
-
-
9
-
-
84944680612
-
How much control do children and adolescents have over genomic testing, parental access to their results, and parental communication of those results to others?
-
Clayton EW. How much control do children and adolescents have over genomic testing, parental access to their results, and parental communication of those results to others? Journal of Law, Medicine and Ethics 2015;43(3):538-544.
-
(2015)
Journal of Law, Medicine and Ethics
, vol.43
, Issue.3
, pp. 538-544
-
-
Clayton, E.W.1
-
10
-
-
57549117036
-
Ethical issues in health research in children
-
The Canadian Paediatric Society reaffirmed the contents of this document in 2016
-
Canadian Paediatric Society. Ethical issues in health research in children. Paediatrics and Child Health 2008;13(8):707-712. The Canadian Paediatric Society reaffirmed the contents of this document in 2016.
-
(2008)
Paediatrics and Child Health
, vol.13
, Issue.8
, pp. 707-712
-
-
-
11
-
-
84908044326
-
Guidance on clinical research involving infants, children and young people: An update for researchers and research ethics committees
-
Mohdi N, Vohra J, Preston J, et al. Guidance on clinical research involving infants, children and young people: An update for researchers and research ethics committees. Archives of Disease in Childhood 2014;99(10):887-891.
-
(2014)
Archives of Disease in Childhood
, vol.99
, Issue.10
, pp. 887-891
-
-
Mohdi, N.1
Vohra, J.2
Preston, J.3
-
12
-
-
34447515456
-
Minors and informed consent: A comparative approach
-
For example, the legislated age of medical majority is 15 years in Denmark, 14 years in Portugal, 15 years in Slovenia, and 16 years in Spain. For more information, see Stultiëns, Goffin T, Borry P, et al. Minors and informed consent: A comparative approach. European Journal of Health Law 2007;14(1):21-46;
-
(2007)
European Journal of Health Law
, vol.14
, Issue.1
, pp. 21-46
-
-
Stultiëns1
Goffin, T.2
Borry, P.3
-
13
-
-
84875978597
-
The legal authority of mature minors to consent to general medical treatment
-
Coleman DL, Roseoff PM. The legal authority of mature minors to consent to general medical treatment. Pediatrics 2013;131(4):786-793.
-
(2013)
Pediatrics
, vol.131
, Issue.4
, pp. 786-793
-
-
Coleman, D.L.1
Roseoff, P.M.2
-
14
-
-
30644456587
-
Gillick v West Norfolk and Wisbech Area Health Authority
-
Gillick competency test for any minor under 16. Gillick v West Norfolk and Wisbech Area Health Authority (1985) 3 All ER 402.
-
(1985)
All ER
, vol.3
, pp. 402
-
-
-
15
-
-
0010975368
-
-
S. O. 1996, Sched. A. s. 4 1
-
Ontario. Health Care Consent Act, 1996, S. O. 1996, c. 2, Sched. A. s. 4 (1).
-
(1996)
Health Care Consent Act
, pp. 2
-
-
-
16
-
-
84958754694
-
Respecting autonomy over time: Policy and empirical evidence on re-consent in longitudinal biomedical research
-
Wallace SE, Gourna EG, Laurie G, et al. Respecting autonomy over time: Policy and empirical evidence on re-consent in longitudinal biomedical research. Bioethics 2015; doi:10.1111/bioe.12165;
-
(2015)
Bioethics
-
-
Wallace, S.E.1
Gourna, E.G.2
Laurie, G.3
-
17
-
-
84913582119
-
Practical guidance on informed consent for pediatric participants in a biorepository
-
Brothers KB, Lynch JA, Aufox SA, et al. Practical guidance on informed consent for pediatric participants in a biorepository. Mayo Clinic 2014:89(11):1471-1480;
-
(2014)
Mayo Clinic
, vol.89
, Issue.11
, pp. 1471-1480
-
-
Brothers, K.B.1
Lynch, J.A.2
Aufox, S.A.3
-
18
-
-
84871185661
-
Developing a policy for paediatric biobanks: Principles for good practice
-
Hens K, Van El CE, Borry P, et al. Developing a policy for paediatric biobanks: Principles for good practice. European Journal of Human Genetics 2013;21(1):2-7;
-
(2013)
European Journal of Human Genetics
, vol.21
, Issue.1
, pp. 2-7
-
-
Hens, K.1
Van El, C.E.2
Borry, P.3
-
20
-
-
84994843981
-
-
Ottawa: Secretariat on Responsible Conduct of Research
-
Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada. Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Ottawa: Secretariat on Responsible Conduct of Research, 2014.
-
(2014)
Tri-council Policy Statement: Ethical Conduct for Research Involving Humans
-
-
-
21
-
-
84949905925
-
Longitudinal studies involving children and adolescents
-
Avard D, Samuel J, Knoppers BM, Montreal: Les Editions Themis
-
Ries NM. Longitudinal studies involving children and adolescents. In: Avard D, Samuel J, Knoppers BM, Paediatric Research in Canada. Montreal: Les Editions Themis, 2009, p. 86.
-
(2009)
Paediatric Research in Canada
, pp. 86
-
-
Ries, N.M.1
-
26
-
-
84908005470
-
The best interests of the child and the return of results in genetic research: International comparative perspectives
-
Zawati M, Parry D, Knoppers BM. The best interests of the child and the return of results in genetic research: International comparative perspectives. BMC Medical Ethics 2014;15:72.
-
(2014)
BMC Medical Ethics
, vol.15
, pp. 72
-
-
Zawati, M.1
Parry, D.2
Knoppers, B.M.3
-
27
-
-
0028959392
-
Informed consent, parental permission, and child assent in pediatric practice
-
American Academy of Pediatrics, Committee on Bioethics. Informed consent, parental permission, and child assent in pediatric practice. Pediatrics 1995;95(2):314-317.
-
(1995)
Pediatrics
, vol.95
, Issue.2
, pp. 314-317
-
-
-
29
-
-
84934762072
-
The clinical application of genomic-wide sequencing for monogenic diseases in Canada: Position statement of the Canadian College of Medical Genetics
-
Boycott K, Hartley T, Adam S, et al. The clinical application of genomic-wide sequencing for monogenic diseases in Canada: Position statement of the Canadian College of Medical Genetics. Journal of Medical Genetics 2015;52(7):431-437.
-
(2015)
Journal of Medical Genetics
, vol.52
, Issue.7
, pp. 431-437
-
-
Boycott, K.1
Hartley, T.2
Adam, S.3
-
30
-
-
84920528362
-
ACMG policy statement: Updated recommendations regarding analysis and reporting of secondary findings in clinical genome-scale sequencing
-
American College of Medical Genetics Board of Directors. ACMG policy statement: Updated recommendations regarding analysis and reporting of secondary findings in clinical genome-scale sequencing. Genetics in Medicine 2015;17(1):68-69.
-
(2015)
Genetics in Medicine
, vol.17
, Issue.1
, pp. 68-69
-
-
-
31
-
-
84937509245
-
Points to consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents
-
Botkin JR, Belmont JW, Berg JS, et al. Points to consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Journal of Human Genetics 2015;97(1):6-21.
-
(2015)
American Journal of Human Genetics
, vol.97
, Issue.1
, pp. 6-21
-
-
Botkin, J.R.1
Belmont, J.W.2
Berg, J.S.3
-
32
-
-
85012181630
-
-
LifeLines. LifeLines in General. https://www.lifelines.nl/lifelines-research/general.
-
-
-
-
34
-
-
84933179911
-
Professionally designed information materials and telephone reminders improved consent response rates: Evidence from an RCT nested within a cohort study
-
Boyd A, Tilling K, Cornish R, et al. Professionally designed information materials and telephone reminders improved consent response rates: Evidence from an RCT nested within a cohort study. Journal of Clinical Epidemiology 2015;68 (8) :877-887..
-
(2015)
Journal of Clinical Epidemiology
, vol.68
, Issue.8
, pp. 877-887
-
-
Boyd, A.1
Tilling, K.2
Cornish, R.3
-
35
-
-
85012136022
-
Norwegian mother and child cohort study
-
Oslo: Norwegian Institute of Public Health
-
Norwegian Mother and Child Cohort Study, Revised Protocol. Oslo: Norwegian Institute of Public Health, 2012, p. 11.
-
(2012)
Revised Protocol
, pp. 11
-
-
-
36
-
-
84918501290
-
Confidentiality, informed consent and children's participation in the Saudi biobank governance: A comparative study
-
Alahmad GH, Dierickx K. Confidentiality, informed consent and children's participation in the Saudi biobank governance: A comparative study. Eastern Mediterranean Health Journal 2014;20(11); 5681-685.
-
(2014)
Eastern Mediterranean Health Journal
, vol.20
, Issue.11
, pp. 5681-5685
-
-
Alahmad, G.H.1
Dierickx, K.2
-
37
-
-
84946544812
-
Federal policy for the protection of human subjects
-
Department of Health and Human Services. Notice of Proposed Rulemaking. Federal Policy for the Protection of Human Subjects. Federal Register 2015;80(173):53933-54061.
-
(2015)
Federal Register
, vol.80
, Issue.173
, pp. 53933-54061
-
-
-
41
-
-
85012130990
-
-
Homepage
-
Children's Oncology Group. Homepage. https://www.childrensoncologygroup. org/.
-
-
-
-
43
-
-
84863008156
-
Newborn screening programmes: Emerging biobanks?
-
Knoppers BM, Avard D, Senecal K. Newborn screening programmes: Emerging biobanks? Norsk Epidemiologi 2012;21(2):163-168.
-
(2012)
Norsk Epidemiologi
, vol.21
, Issue.2
, pp. 163-168
-
-
Knoppers, B.M.1
Avard, D.2
Senecal, K.3
-
45
-
-
85012185043
-
-
Newborn Screening Saves Lives Reauthorization Act of 2014, Pub. L. 113-240
-
U. S. Congress. 113th Congress (2013-2014). H. R. 1281, Newborn Screening Saves Lives Reauthorization Act of 2014, Pub. L. 113-240.
-
(2013)
H. R
, pp. 1281
-
-
-
47
-
-
85012176150
-
-
July 2
-
Genomeweb. Off and Running. July 2, 2015. https://www.genomeweb.com/scan/and-running.
-
(2015)
Off and Running
-
-
Genomeweb1
-
48
-
-
84945127212
-
Consent is the cornerstone of ethically valid research: Ethical issues in recontacting subjects who enrolled in research as a minor
-
Paquette ET, Ross LF. Consent is the cornerstone of ethically valid research: Ethical issues in recontacting subjects who enrolled in research as a minor. American Journal of Bioethics 2015, 15(10):61-63.
-
(2015)
American Journal of Bioethics
, vol.15
, Issue.10
, pp. 61-63
-
-
Paquette, E.T.1
Ross, L.F.2
-
49
-
-
84873025492
-
Emerging issues in paediatric health research consent forms in Canada: Working towards best practices
-
Dove E, Avard D, Black L. et al. Emerging issues in paediatric health research consent forms in Canada: Working towards best practices. BMC Medical Ethics 2013;14:5.
-
(2013)
BMC Medical Ethics
, vol.14
, pp. 5
-
-
Dove, E.1
Avard, D.2
Black, L.3
-
50
-
-
77951571382
-
Handling ethical, legal and social issues in birth cohort studies involving genetic research: Responses from studies in six countries
-
Ries N, LeGrandeur J, Caulfield T. Handling ethical, legal and social issues in birth cohort studies involving genetic research: Responses from studies in six countries. BMC Medical Ethics 2010;11(4):1-9.
-
(2010)
BMC Medical Ethics
, vol.11
, Issue.4
, pp. 1-9
-
-
Ries, N.1
LeGrandeur, J.2
Caulfield, T.3
-
51
-
-
84938151326
-
Opinions of young adults on re-consenting for biobanking
-
Rush A, Battisti R, Barton B, et al. Opinions of young adults on re-consenting for biobanking. Journal of Pediatrics 2016;167(4):925-930.
-
(2016)
Journal of Pediatrics
, vol.167
, Issue.4
, pp. 925-930
-
-
Rush, A.1
Battisti, R.2
Barton, B.3
-
52
-
-
84959524196
-
Re-consent upon reaching the age of majority: Ethical issues
-
Resnik DB. Re-consent upon reaching the age of majority: Ethical issues. Journal of Clinical Research Best Practices 2014;10(2).
-
(2014)
Journal of Clinical Research Best Practices
, vol.10
, Issue.2
-
-
Resnik, D.B.1
-
53
-
-
70249122789
-
Pediatric biobanks: Approaching informed consent for continuing research after children grow up
-
Goldenberg AJ, Hull SC, Botkin JR, et al. Pediatric biobanks: Approaching informed consent for continuing research after children grow up. Journal of Pediatrics 2011;155(4):578-583;
-
(2011)
Journal of Pediatrics
, vol.155
, Issue.4
, pp. 578-583
-
-
Goldenberg, A.J.1
Hull, S.C.2
Botkin, J.R.3
-
54
-
-
79952448540
-
The storage and use of biological tissue samples from minors for research: A focus group study
-
Hens K, Nys H, Cassiman JJ, et al. The storage and use of biological tissue samples from minors for research: A focus group study. Public Health Genomics 2011;14(2):68-76.
-
(2011)
Public Health Genomics
, vol.14
, Issue.2
, pp. 68-76
-
-
Hens, K.1
Nys, H.2
Cassiman, J.J.3
|