Table 1.

Needs expressed by respondents to the questionnaire (n = 20) for changes in practice, culture and structure

Theme:	Need expressed:	Illustrative quote:
Needs for changing practice	More focus on pre-test and post-test counseling	“[What currently is missing is] good preparation for people having diagnostic tests but who are unprepared for the result (often tests offered by non-genetic specialists). More time [is needed] for psychological care after testing.” (#10 Clinical Geneticist)
	New division of responsibilities	“[A weak link in current genetic services] may be the understanding (by the geneticists) that times are changing and there should be a new way of dividing the work: an increasing role for other specialists and maybe only diagnostics/counselling of the rare diseases left as the special goal for only the clinical geneticists.” (#20 Clinical geneticist)”
	Close collaboration and communication between geneticists and non-geneticists	“I think there needs to be development of [professional] teams around the different human disorders, and a clinical geneticists should be represented in such teams.” (#12 Clinical Geneticist)
Needs for changing culture	Attention for genetics in mainstream medicine	“The main problem is that other health care specialists (with few exceptions) do not recognize the influence of genetics in their field. Maybe publishing more genetics related articles in [more general] medicine journals would [lead to] more attention.” (#8 Clinical Geneticist) “[What is missing is] greater awareness of genetic risk in wider health system (outside genetics, especially in primary care).” (#10 Clinical Geneticist)
Needs for changing structure	Statutory registration of staff trained in genetics	“Statutory registration of genetic counsellors and technical staff [is missing and] would provide quality assurance of the professional standards of these members of the workforce” (#5 Clinical Geneticist)
	Education for non-geneticists	[In order to make developments within genetic services meaningful there needs to be] better education for non-geneticists in genetic testing in their discipline.” (#7 Clinical Geneticist)
	Availability of essential staff and equipment	“Staff and finance [are] needed. [There currently is] poor secretarial support, not enough facility for follow up of families needing screening etc. [and there is a] need for better genetic registers” (#7 Clinical Geneticist)
	Existence of guidelines/protocols	“[An example of good practice is the availability of ] agreed protocols for offering predictive/presymptomatic testing.” (#10 Clinical Geneticist) “What could be improved are the protocols outside clinical genetics.” (#3 Researcher in Health Sciences)
	Legal structures	“Perhaps some policy statement [is needed] saying that if you offer genetic tests you must also be able to offer genetic counselling.” (#12 Clinical Geneticist)
	Financial structures	“[There currently is a] lack of reimbursement of counselling and support activities by non-medical professionals” (#2 Researcher in Psychology) “[What is missing is] reimbursement for non-diagnostic tests (carrier, predictive/pre-symptomatic).” (#14 Clinical Geneticist) “[Good aspects of current genetic services include] […] reimbursement for genetic testing in patients under obligatory health care [the basic health care package], if testing meets established criteria of "medical indication".” (#6 Clinical Geneticist)