Ethical Issues Raised by the Clinical Implementation of New Diagnostic
Tools for Genetic Diseases in Children: Array Comparative Genomic
Hybridization (aCGH) as a Case Study
Julia S
1,2,3
, Soulier A
1,2
, Leonard S
1,2
, Sanlaville D
4
, Vigouroux A
3
, Keren B
5
, Heron D
5
, Till M
4
, Chassaing N
3,6
, Bouneau L
3
, Bourrouillou G
3
, Edery P
4
, Calvas
P
3,6
and Thomsen AC
1,2
1
UMRU 1027, Inserm, Toulouse, France
2
Universite de Toulouse, Universite Paul Sabatier Toulouse 3, UMR 1027, Toulouse, France
3
CHU Toulouse, Hopital Purpan, Service de Genetique Medicale, Toulouse, France
4
Service de cytogenetique constitutionnelle, Hospices Civils de Lyon Inserm U1028, Lyon Neuroscience Research Center, UCBL1, TIGER team, Lyon, F-69000, France
5
Departement de genetique, hopital de la Pitie-Salpetriere, Assistance Publique-Hopitaux de Paris, 47-83, boulevard de l’hopital, 75013 Paris, France
6
Université Paul Sabatier, Equipe EA4555_GR2DE, Toulouse, France
Corresponding author: Julia S, Service de Genetique Medicale, Hopital Purpan, TSA 40031-31059, Cedex9, Toulouse, France, Tel: 33(0)561779055; Fax: 33(0)5
61779073; E-mail: julia.s@chu-toulouse.fr
Received date: Sep 25, 2015; Accepted date: Nov 12, 2015; Published date: Nov 18, 2015
Copyright: ©2015 Julia S, et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use,
distribution, and reproduction in any medium, provided the original author and source are credited.
Abstract
High throughput genetic technologies offer the opportunity to gain precision in the diagnosis of numerous
diseases and to better understand their molecular basis. However they bring new practical and ethical challenges,
some of which are foreseeable and therefore amenable to the timely adoption of strategies to ensure that they are
introduced and used in a just and beneficial manner. One way of foreseeing these challenges is to examine
technologies that have already been transferred from research to the clinical setting in order to identify the ethical
issues and develop strategies to move forward in an ethical way. One such model for new genetic technologies is
Array Comparative Genomic Hybridization (aCGH), which has been gradually adopted in recent years as a standard
technique in clinical genetics. CGH challenging current clinical practice regarding the detection and diagnosis of
human chromosome abnormalities in intellectual disability (ID) and congenital malformations in children. Experience
with aCGH has shown that it delivers an unprecedented volume of information for patients, counsellors, and health
care providers but it also raises specific ethical challenges which can serve as signposts for potential issues with
future, even more detailed, genetic technologies. These issues are described and illustrated through case histories,
and their consequences for the patient-clinician relationship in genetic consultation are discussed. The
consequences of employing this technology, as compared to the more traditional genetic diagnostic methods used in
cases of intellectual disability are categorised into issues linked to 1) the vulnerable nature of patients who are
mostly children, mentally retarded people or “future parents”; 2) the way in which information is controlled at each
stage of the process, as a function of its potential relevance to the clinical condition being diagnosed, 3) the
information related to conditions other than ID or “incidental findings” that become the rule with high throughput
technologies. The issues highlighted by the clinical scenarios discussed here can be expected to occur with even
greater frequency in the future as whole exome and whole genome sequencing are introduced. Building on our
experience with the transfer and adoption of aCGH into clinical genetics, we have developed a grid of points to be
considered when translating such technologies from research to clinic.
Keywords: Diagnostic tools; Genetic diseases
Ethical Aspects of Array Comparative Genomic
Hybridization (aCGH) for Intellectual Disability
Diagnosis and Genetic Counselling
Introduction
Array comparative genomic hybridization (aCGH), a method for
genome-wide detection of DNA copy-number variants (CNV), was
frst developed in the mid 1990’s as a research tool for the investigation
of genomic alterations in tumours [1]. aCGH has been transferred
from research to clinic in less than a decade and has become the
method of choice to detect and diagnose human chromosomal
constitutional abnormalities in clinical genetics departments [2].
aCGH gives a higher resolution than classic karyotyping methods and
has demonstrated its scientifc and medical value by uncovering new
microdeletion syndromes and doubling the number of pathogenic
chromosome imbalances found in symptomatic patients [3,4], used
only rarely in the mid 2000’s, aCGH is now considered as a frst line
diagnostic tool in intellectual disability, autism and multiple congenital
malformation syndromes which, as molecularly highly heterogeneous
genetic conditions, requiring sophisticated tools to carry out in depth
explorations.
Early adopters of CGH in the clinical context have experienced
difculties with the interpretation and communication of results as
demonstrated by the increasing numbers of clinical and technical
reports in the literature [5]. Te complexity of genetics generally and
the general lack of familiarity with this specialised subject among
patients have rendered genetic counselling discussions lengthy and
Clinical Research & Bioethics
Julia et al., J Clin Res Bioeth 2015, 6:6
http://dx.doi.org/10.4172/2155-9627.1000245
Research article Open Access Journal
J Clin Res Bioeth
ISSN:2155-9627 JCRB, an open access journal
Volume 6 • Issue 6 • 1000245