The elusive ideal of inclusiveness: lessons from a worldwide survey of neurologists on the ethical issues raised by whole-genome sequencing

Hurlimann, Thierry; Jaitovich Groisman, Iris; Godard, Béatrice

doi:10.1186/s12910-017-0187-8

Table 1 Contacts with medical associations, colleges of physicians and neurology associations

From: The elusive ideal of inclusiveness: lessons from a worldwide survey of neurologists on the ethical issues raised by whole-genome sequencing

MEDICAL ASSOCIATIONS AND COLLEGES OF PHYSICIANS
	# countries/areas listed^a	# of organizations identified^b	# of countries/areas for which NO relevant organization(s) could be identified	Contact and follow-up ^c
	# countries/areas listed^a	# of organizations identified^b		YES^d	NO^e or Lost in follow-up^f	No answer	No contact email or invalid email addresses^c	# of direct invitations to neurologists^g
North America	3	30	0	1	7	22	0	-
Central America	6	8	1	0	0	8	0	-
South America	10	16	0	0	1	12	3	-
Caribbean	27	17	11	0	1	16	0	-
Europe (except Spain)^h	53	65	3	0	7	54	4	-
Eastern Mediterranean	20	28	1	0	0	23	5	-
South-East Asia^h	11	10	2	0	0	10	0	-
Western Pacific Region^h	37	21	21	0	0	21	0	-
Africa	47	43	8	2	0	29	12	-
TOTAL (medical associations and colleges)	215	238	47	3	16	195	24	-
NEUROLOGY SOCIETIES AND ASSOCIATIONS
International	-	3	-	2	0	1	0	0
North America	3	14	0	4	4	6	0	52
Central America	6	9	0	2	0	7	0	20
South America	10	17	0	8	2	7	0	0
Caribbean	27	2	25	2	0	0	0	97
Europe	54	87	7	29	3	54	1	323
Eastern Mediterranean	20	15	5	2	1	12	0	190
South-East Asia	11	14	4	0	1	11	2	110
Western Pacific region	37	15	25	3	0	12		38
Africa	47	14	35	1	0	12	1	0
TOTAL (neurology organizations)	215	190	101	53	11	122	4	830

^aList of countries/geographical areas based on the WHO regions (http://www.who.int/countries/en/). Accessed Summer 2014
^bMedical associations were identified through the Geneva Foundation for Medical Education and Research database: http://www.gfmer.ch/Medical_search/Medical_schools.php (Accessed Summer 2014). Search was completed with Google ([NAME OF THE COUNTRY] AND “medical association”] OR [NAME OF THE COUNTRY] AND “physician” and “college”. Neurology associations were identified through the World Federation of Neurology database at http://www.wfneurology.org/member-societies (Accessed Summer 2014) and the list of all the members of the European Academy of Neurology provided at https://www.ean.org/National-Neurological-Societies.2672.0.html (Accessed Summer 2014). Search was completed on Google with: [NAME OF THE COUNTRY] AND “neurology” (in Spanish, Portuguese, French or English). Neurosciences/neurosurgery organizations were excluded. Numbers include regional associations
^cWe sent personalized emails and one reminder using email address(es) provided on the websites mentioned in footnote (b) above. For medical associations: the sending of requests and reminders was interrupted during the process, given the very low response rate. For neurology organizations, in case of no answer or invalid email addresses, we consulted the neurology associations’ websites, Google and PubMed to identify names and email addresses of board members (President, Vice-president and Secretary). New personalized emails were sent instead of a reminder
^d Includes a few neurology associations that provided the complete list of their members’ emails
^eIncludes associations that refused to disseminate our invitation but forwarded our request or referred us to another association
^fOrganizations that gave a positive answer but 1) did not seem to proceed and could not be reached again; 2) required payment to disseminate our invitation and/or 3) would only communicate postal addresses of members
^g When the email addresses of neurology associations boards members (other than President/Vice-President/Secretary) were provided on websites, we sent a direct survey invitation to these members
^h Two medical associations were identified in Spain, but they were not contacted as the very low response rate had us interrupt this means of recruitment. Requests and reminders were likewise stopped for medical associations in South-East Asia and Western Pacific Region

Back to article page

ISSN: 1472-6939

Contact us

General enquiries: journalsubmissions@springernature.com

BMC Medical Ethics

Contact us