Login to MyKarger

New to MyKarger? Click here to sign up.



Login with Facebook

Forgot your password?

Authors, Editors, Reviewers

For Manuscript Submission, Check or Review Login please go to Submission Websites List.

Submission Websites List

Institutional Login
(Shibboleth or Open Athens)

For the academic login, please select your country in the dropdown list. You will be redirected to verify your credentials.

Original Paper

The Storage and Use of Biological Tissue Samples from Minors for Research: A Focus Group Study

Hens K.a · Nys H.a · Cassiman J.-J.b · Dierickx K.a

Author affiliations

aCentre for Biomedical Ethics and Law and bDepartement Menselijke Erfelijkheid, Katholieke Universiteit Leuven, Leuven, Belgium

Related Articles for ""

Public Health Genomics 2011;14:68–76

Do you have an account?

Login Information





Contact Information












By signing up for MyKarger you will automatically participate in our year-End raffle.
If you Then Do Not wish To participate, please uncheck the following box.

Yes, I wish To participate In the year-End raffle And Get the chance To win some Of our most interesting books, And other attractive prizes.


I have read the Karger Terms and Conditions and agree.



Login Information





Contact Information












By signing up for MyKarger you will automatically participate in our year-End raffle.
If you Then Do Not wish To participate, please uncheck the following box.

Yes, I wish To participate In the year-End raffle And Get the chance To win some Of our most interesting books, And other attractive prizes.


I have read the Karger Terms and Conditions and agree.



To view the fulltext, please log in

To view the pdf, please log in

Buy

  • FullText & PDF
  • Unlimited re-access via MyKarger
  • Unrestricted printing, no saving restrictions for personal use
read more

CHF 38.00 *
EUR 35.00 *
USD 39.00 *

Select

KAB

Buy a Karger Article Bundle (KAB) and profit from a discount!

If you would like to redeem your KAB credit, please log in.


Save over 20% compared to the individual article price.
Learn more

Rent/Cloud

  • Rent for 48h to view
  • Buy Cloud Access for unlimited viewing via different devices
  • Synchronizing in the ReadCube Cloud
  • Printing and saving restrictions apply

Rental: USD 8.50
Cloud: USD 20.00


Select

Subscribe

  • Access to all articles of the subscribed year(s) guaranteed for 5 years
  • Unlimited re-access via Subscriber Login or MyKarger
  • Unrestricted printing, no saving restrictions for personal use
read more

Subcription rates


Select

* The final prices may differ from the prices shown due to specifics of VAT rules.

Article / Publication Details

First-Page Preview
Abstract of Original Paper

Received: June 04, 2009
Accepted: October 22, 2009
Published online: April 10, 2010
Issue release date: March 2011

Number of Print Pages: 9
Number of Figures: 0
Number of Tables: 1

ISSN: 1662-4246 (Print)
eISSN: 1662-8063 (Online)

For additional information: https://www.karger.com/PHG

Abstract

Genetic research on pediatric stored tissue samples raises specific ethical questions that differ from those raised when adults are the donors. To investigate opinions on this matter, we conducted 10 focus group discussions. Five focus groups were conducted with adult participants and 5 had teenage participants between 15 and 19 years old. The discussions were analyzed with NVIVO 8 (qualitative research software). We found the following recurrent categories: the requirement that research should not pose any burden on children and that it should benefit other children, the trust people had in the role of parents, the need for information and the growth towards autonomy. Both the adults and teenagers we interviewed thought that the inclusion of tissue samples from minors in research had ethical implications. A major concern was that nontherapeutic research would pose no extra burden on children, which would assume the use of nonintrusive methods of gathering samples and the use of samples that were gathered in a diagnostic context. Participants, however, also understood the necessity of such research. The overall impression was that parents would be the best persons to make decisions on behalf of a small child and that the same parents would engage their children in the decision-making when they grew older. People thought that there was a duty to recontact minors when they reached the age of competence but on a best-effort basis.

© 2010 S. Karger AG, Basel


References

  1. Rasmussen SA, Lammer EJ, Shaw GM, Finnell RH, McGehee RE Jr, Gallagher M, Romitti PA, Murray JC: Integration of DNA sample collection into a multi-site birth defects case-control study. Teratology 2002;66:177–184.
  2. Pembrey M: The Avon Longitudinal Study of Parents and Children (ALSPAC): a resource for genetic epidemiology. Eur J Endocrinol 2004;151(suppl 3):125–129.
    External Resources
  3. Hens K, Nys H, Cassiman JJ, Dierickx K: Biological sample collections from minors for genetic research: a systematic review of guidelines and position papers. Eur J Hum Genet 2009;17:979–990.
  4. Elkin K, Jones D: Guthrie cards: legal and ethical issues. NZ Bioethics J 2000;1:22–26.
  5. Therrell BL, Hannon WH, Pass KA, Lorey F, Brokopp C, Eckman J, Glass M, Heidenreich R, Kinney S: Guidelines for the retention, storage, and use of residual dried blood spot samples after newborn screening analysis: statement of the Council of Regional Networks for Genetic Services. Biochem Mol Med 1996;57:116–124.
  6. Lysaught M, Milhollin L, Peirce R, et al: A pilot test of DNA-based analysis using anonymized newborn screening cards in Iowa; in Weir RF (ed): Stored Tissue Samples: Ethical, Legal, and Public Policy Implications. Iowa City, University of Iowa Press, 1998, pp 3–31.
  7. Pelias MK, Markward NJ: Newborn screening, informed consent, and future use of archived tissue samples. Genet Test 2001;5:179–185.
  8. Baumann TK: Proxy consent and a national DNA databank: an unethical and discriminatory combination. Iowa Law Rev 2001;86:667–701.
  9. Avard DM, Knoppers BM: Ethical dimensions of genetics in pediatric neurology: a look into the future. Semin Pediatr Neurol 2002;9:53–61.
  10. Knoppers BM, Avard D, Cardinal G, Glass KC: Science and society: children and incompetent adults in genetic research: consent and safeguards. Nat Rev Genet 2002;3:221–225.
  11. Dhanda RK: Legal and ethical issues of newborn screening. Pediatr Ann 2003;32:540–546.
  12. Kharaboyan L, Avard D, Knoppers BM: Storing newborn blood spots: modern controversies. J Law Med Ethics 2004;32:741–748.
  13. Laberge C, Kharaboyan L, Avard D: Newborn screening, banking, and consent. GenEdit 2004;2:1–15.
  14. Thomas C: The use and control of heel prick blood samples. Med Law 2005;24:259–277.
  15. Holm S: Informed consent and the bio-banking of material from children. Genomics Soc Policy 2005;1:16–26.
  16. Helgesson G: Children, longitudinal studies, and informed consent. Med Health Care Philos 2005;8:307–313.
  17. Burke W, Diekema DS: Ethical issues arising from the participation of children in genetic research. J Pediatr 2006;149(suppl 1):34–38.
  18. Fisher CB: Privacy and ethics in pediatric environmental health research – part II: protecting families and communities. Environ Health Perspect 2006;114:1622–1625.
  19. McHale J, Habiba M, Dixon-Woods M, Cavers D, Heney D, Prichard-Jones K: Consent for childhood cancer tissue banking in the UK: the effect of the Human Tissue Act 2004. Lancet Oncol 2007;8:266–272.
  20. Goodenough T, Williamson E, Kent J, Ashcroft R: Ethical protection in research: including children in the debate; in Smyth M, Williamson E (eds): Researchers and Their ‘Subjects’. Bristol, The Policy Press, 2004, pp 55–72.
  21. Williamson E, Goodenough T, Kent J, Ashcroft R: Children’s participation in genetic epidemiology; in Tutton R, Corrigan O (eds): Genetic Databases: Socio-Ethical Issues in the Collection and Use of DNA. London/New York, Routledge, 2004, pp 139–160.
  22. Avard D, Silverstein T, Sillon G, Joly Y: Researchers’ perceptions of the ethical implications of pharmacogenomics research with children. Public Health Genomics 2009;12:191–201.
  23. Neidich AB, Joseph JW, Ober C, Ross LF: Empirical data about women’s attitudes towards a hypothetical pediatric biobank. Am J Med Genet A 2008;146:297–304.
    External Resources
  24. Kaufman D, Geller G, LeRoy L, Murphy J, Scott J, Hudson K: Ethical implications of including children in a large biobank for genetic-epidemiologic research: a qualitative study of public opinion. Am J Med Genet C Semin Med Genet 2008;148:31–39.
  25. Samuël J, Ries NM, Malkin D, Knoppers BM: Biobanks and longitudinal studies: where are the children? GenEdit 2008;6:1–8.
  26. Wendler D, Shah S: Should children decide whether they are enrolled in nonbeneficial research? Am J Bioethics 2003;3:1–7.
  27. Meaux JB, Bell PL: Balancing recruitment and protection: children as research subjects. Issues Compr Pediatr Nurs 2001;24:241–251.
  28. Nuffield Council on Bioethics: Human tissue, ethical and legal issues. 1995.
  29. Council for International Organizations of Medical Science (CIOMS): International ethical guidelines for biomedical research involving human subjects. 2002. Available at http://www.cioms.ch/frame_guidelines_nov_2002.htm.
  30. Commission de l’éthique de la science et de la technologie: Les enjeux éthiques des banques d’information génétique: pour un encadrement démocratique et responsable. 2003.
  31. World Health Organization: Genetic databases: assessing the benefits and the impacts on human and patient rights. 2003. Available at http://www.law.ed.ac.uk/ahrb/publications/online/whofinalreport.doc.
  32. Deutsche Gesellschaft für Humangenetik: DNA-Banking und personenbezogene Daten in der biomedizinischen Forschung: technische, soziale und ethische Frage. 2004.
  33. Nationaler Ethikrat: Biobanken für die Forschung. 2004.
  34. Irish Council for Bioethics: Human biological material: recommendations for collection, use and storage in research. 2005.
  35. Austrian Bioethics Commission: Biobanken für die medizinische Forschung. 2007.
  36. Korts K, Weldon S, Guðmundsdóttir ML: Genetic databases and public attitudes: a comparison of Iceland, Estonia and the UK. TRAMES 2004;1:131–149.
  37. MacDougall C, Fudge E: Planning and recruiting the sample for focus groups and in-depth interviews. Qual Health Res 2001;11:117–126.
  38. Simon CM, Mosavel M: Ethical design and conduct of focus groups in bioethics research; in Jacoby L, Siminoff LA (eds): Empirical Methods for Bioethics: A Primer. Amsterdam, Elsevier, 2007, pp 63–81.
  39. Stewart K, Williams M: Researching online populations: the use of online focus groups for social research. Qual Res 2005;5:395–416.
    External Resources
  40. Hens K, Nys H, Cassiman JJ, Dierickx K: Genetic research on stored tissue samples from minors: a systematic review of the ethical literature. Am J Med Genet A 2009;149A:2346–2358.
  41. European Society of Human Genetics: Genetic testing in asymptomatic minors: recommendations of the European Society of Human Genetics. Eur J Hum Genet 2009;17:720–721.
  42. Stultiëns L, Goffin T, Borry P, Dierickx K, Nys H: Minors and informed consent: a comparative approach. Eur J Health Law 2007;14:21–46.
  43. Gammelgaard A, Bisgaard H: Seven-year-old children’s perceptions of participating in a comprehensive clinical birth cohort study. Clin Ethics 2009;4:79–84.
    External Resources
  44. Bartington SE, Peckam C, Brown D, Joshi H, Deateux C: Feasibility of collecting oral fluid samples in the home setting to determine seroprevalence of infections in a large-scale cohort of preschool-aged children. Epidemiol Infect 2009;137:211–218.
  45. Mumford SE: Children of the 90s: ethical guidance for a longitudinal study. Arch Dis Child Fetal Neonatal Ed 1999;81:F146–F151.
  46. Birmingham K, Furmston M: Avon Longitudinal Study of Parents and Children (ALSPAC): ethical process; in Gunning J, Holm S (eds): Ethics, Law and Society. Aldershot, Ashgate Publishing, 2005, pp 65–74.
  47. National Bioethics Commission: Recommendation on banks of biological material of human origin (biobanks) in biomedical research. 2006.
  48. National Cancer Institute: Best practices of biospecimen resources. 2007.
  49. Boddington P, Gregory M: Adolescent carrier testing in practice: the impact of legal rulings and problems with ‘gillick competence’. J Genet Couns 2008;17:509–521.

Article / Publication Details

First-Page Preview
Abstract of Original Paper

Received: June 04, 2009
Accepted: October 22, 2009
Published online: April 10, 2010
Issue release date: March 2011

Number of Print Pages: 9
Number of Figures: 0
Number of Tables: 1

ISSN: 1662-4246 (Print)
eISSN: 1662-8063 (Online)

For additional information: https://www.karger.com/PHG


Copyright / Drug Dosage / Disclaimer

Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher.
Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug.
Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.