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Using assessments of biological and genetic risk to inform policy priorities: A practitioner perspective Dr Carol Chu.

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Presentation on theme: "Using assessments of biological and genetic risk to inform policy priorities: A practitioner perspective Dr Carol Chu."— Presentation transcript:

1 Using assessments of biological and genetic risk to inform policy priorities: A practitioner perspective Dr Carol Chu

2 Background Yorkshire Regional Genetics Service – 3.6 million population Bradford, Airedale, North Kirklees high ethnic minority population mainly South Asian First genetic counselling service to employ Asian counsellor Now 3 full time Asian counsellors with 2 more posts imminent Presentation of some of the issues around counselling in families

3 Consanguinity and autosomal recessive disorders Rate of consanguinity in UK Pakistani population 20- 88% Increased risk of abnormalities 3% - more if complex consanguinity 1 in 100 babies from Pakistani community die of lethal malformations Non-lethal disorders 4X higher in Pakistani population in Bradford than indigenous white More than 136 recognisable AR conditions described in Bradford with more presently un-named Genetic testing only available for small proportion of cases

4 Clinical experience –issues in counselling Definition of genetic counselling: a communicative process which deals with the human problems associated with the occurrence or risk of occurrence of a genetic disorder in a family. Some genetic counselling issues and difficulties common to all ethnic groups but some particular issues in minority ethnic groups: Language/communication Cultural issues Health beliefs patients and doctors Lay beliefs regarding inheritance

5 Language/communication- use of translators 1 Translators should be used in consultations with patients who do not speak English. However, practically difficult to arrange at short notice and family members often still used Family 1 – patient with breast cancer, did not speak English Daughter went to surgical appointments. Did not tell mother that surgeon had suggested mastectomy Patient only realised after surgery In another family 10 year old daughter used to translate Family 1

6 Language/communication – use of translators 2 Even when translators used can be difficult to get over medical concepts unless translator is trained Family 2- patient deaf and used BSL, mother did not speak English but could use some sign language, father spoke English but did not sign Sign language interpreter needed instruction about genetics before she could explain to patient, Asian counsellor explained to mother and geneticist to father and via sign language interpreter to patient Family 2

7 Language/communication – use of translators 3 Even if patients and family can speak English difficult concepts sometimes require own language Family 3 – wife at high risk of breast cancer. Husband spoke good English but wanted counsellor to explain in Urdu as well No word for chromosome or cancer in Urdu Need to explain in concepts applicable to culture e.g. “chromosomes like prayer beads” Family 3

8 Cultural Issues 1 May be cultural issues which need to be taken into account re treatment Family 4 – breast cancer in Sikh man, issues re chemotherapy and facial hair loss Women on ward wanted to draw curtains round bed to pray Family 4

9 Cultural issues 2 Stigma associated with some conditions e.g cancer and mental illness Family 5 – patient would not tell anyone about cancer due to fear of stigmatisation in the community. Patients daughter did not tell her in-laws that she was taking mother to the hospital Family 5

10 Cultural Issues 3 Medical profession may hold views that patients from certain cultures will not accept treatments e.g prenatal diagnosis Timescales involved e.g. ensoulment at 120 days – problem in antenatal screening Family 6 had boy affected by DMD, they requested PND for the next pregnancy and had a girl From 1990-1995 survey of PND in Leeds 75% South Asian patients took up offer of PND Family 6

11 Cultural issues 4 Culture may determine levels of distress in families Family 7 - 2 nd girl born with cliteromegaly (mild) Family ashamed would not tell anyone in extended family, wouldn’t allow anyone else to look after her, wanted to move house Worried that child might not look male or female – Hijra Would have preferred a disabled child Family 7

12 Health beliefs 1 Health beliefs may make counselling difficult Family 8 patient has HD - 2 females in family with mental health problems “possessed by evil spirits”. Affected men aggressive – macho Community shunned family due to belief that patient was drinking Family 8

13 Health beliefs 2 Health beliefs around cancer may mean patients do not believe genetic explanation Family 9 – increased risk in Jewish population due to Jewish diet Other beliefs that it may be “catching” or prevented by breast feeding Family 9

14 Health beliefs 3 – medical profession Genetics is a “new” subject Knowledge of genetics for most doctors is poor Many doctors believe that breast cancer cannot be passed on through male line Family 10 – daughter died breast cancer at young age. Paternal aunt affected –were not referred until father also developed breast cancer Other daughters cancer picked up on screening mammography Family 10

15 Lay beliefs 1 Autosomal recessive inheritance difficult to understand if no-one else affected in family Family 11 – three affected children explanation of recessive inheritance rejected by family – “evil eye” Family 11

16 Lay beliefs 2 In consanguineous families where autosomal dominant conditions occur patients (and doctors) may think this is due to consanguinity However – increased risks for children and wider family Family 12

17 Lay beliefs 3 - disclosure In genetic conditions other family members may be affected or at risk of having affected children May be more than one recessive condition running in family that geneticist may know about Choices and surveillance rely on disclosure of genetic risk to relatives Family 13

18 Conclusion What does this mean for policy? Need better education about genetics for health care professionals Cultural sensitivity in dealing with genetic/biological risk (not cultural stereotyping) Antenatal screening policy-makers need to be aware timing of screening important Use of trained translators/counsellors will aid equity of access Good information in suitable format needs to be available Resources required for optimal culturally sensitive services

19 Acknowledgements Dr Mushtaq Ahmed Gulshan Karbani Dr Peter Corry Dr Karl Atkin Professor Jenny Hewison Yorkshire Regional Genetic Service Patients and families

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