Provision of Genetics Healthcare in Scotland:

Logistics and Ethics

Dr Gary Kerr

A lecture for the University of GlasgowMSc (Med Sci) in Medical Genetics

Objectives

• To introduce the concept of the National Health Service (NHS)

• To describe how NHS Scotland is structured and regulated

• To describe the provision of genetics healthcare services in Scotland

• To introduce genetics healthcare within a policy context

• Class discussion of ethical issues in genetics healthcare and exposure to ‘grey areas’ *** WARNING – CRITICAL THINKING REQUIRED***

Healthcare in the United Kingdom• Healthcare is provided by the National Health Service• Established in 1948 by Aneurin Bevan• Good healthcare should be available to all, regardless of wealth

Principles of the NHS

1 •Access to healthcare is based on clinical need, not an individual’s ability to pay

2 •NHS must meet the needs of everyone

3 •Healthcare must be free at the point of delivery

4 •The NHS provides a comprehensive service regardless of gender, race, disability, age, sexual orientation, religion or belief

5 •The NHS aspires to the highest standards of excellence and professionalism

6 •NHS services must reflect the needs and preferences of patients, their families and their carers

7 •The NHS works in partnership with other organisations in the interest of patients, local communities and the wider population

8 •The NHS is committed to sustainability and providing value-for-money

9 •The NHS is accountable to the public, communities and patients

NHS Scotland• NHS Scotland is the national provider of healthcare in Scotland• NHS Scotland comprises:

– 14 Regional Health Boards– 8 Specialist Health Boards

Specialist Health Board Remit

NHS Education for Scotland NHS workforce education, training & development

NHS Health Scotland Improving health & tackling inequalities in health

NHS National Services Scotland

Improving efficiency across NHS Scotland (finance, IT, business)

NHS24 Telephone service that offers advice about health (08454 24 24 24)

Healthcare Improvement Scotland

Ensure high-quality, evidence-based, safe and effective healthcare

The State Hospital One of 4 high security hospitals in the UK

The Golden Jubilee National Hospital

Scotland’s flagship hospital for reducing national waiting times in specialities

Scottish Ambulance Service Emergency response; Patient transportation; Major incidents

Regional Genetics Services

What are Genetics Services?

Clinical Genetics Face of Genetics Services Outpatient speciality Pedigree analysis (family history) Taking samples for further testing Genetic counselling Communicating complex information Provide information about risk Discussions about options, therapies, diagnostic testing, disease management, support groups Diagnosis of rare genetic conditions Co-ordination of screening for specific rare syndromes Multidisciplinary working

Molecular Genetics(‘DNA labs’)

Genetic testing for specific changes (mutations) in the genome e.g. BRCA1, BRCA2

Cytogenetics(‘Chromosome labs’)

Test for chromosome abnormalitiese.g. Down syndrome

Biochemical GeneticsTest for unusual protein levelse.g. Scottish Newborn Screening Laboratory (Glasgow)

Policy Context of Genetics HealthcareUK Government Scottish GovernmentProvision of healthcare in England (NHS)

Provision of healthcare in Scotland (NHS Scotland)

Science PolicyScientific ResearchResearch EthicsGenetic TestingAssisted Conception (IVF, PGD)XenotransplantationAbortion

Emerging Science and Bioethics Advisory Committee (ESBAC)

• Established in late 2012 to replace the Human Genetics Commission (HGC)

• Located within the Department of Health (England) but has broader UK remit

• Advise the 4 UK Health Ministers on emerging healthcare scientific developments and their ethical, legal, social and economic implications

UK Genetic Testing Network (UK GTN)

• UK GTN advises the NHS throughout the UK about genetic testing for inheritable conditions

• UK GTN is a network of genetic testing laboratories, clinicians and commissioners of genetic services and involves input from patient groups

• UK GTN advises whether or not a test is likely to benefit patients

• If it is, UK GTN will make a recommendation to the Genetics Commissioning Advisory Group (GenCAG)

• GenCAG will then request that the relevant commissioners provide funding for the test

• In Scotland, NSD is responsible for commissioning genetic testing

National Services Division (NSD)

• NSD is a division of NHS National Services Scotland

• NSD responsible for commissioning & performance-managing specialist services

• NSD aims to:– Ensure equity of access for all Scottish residents to

specialist and screening services– Ensure best possible clinical outcomes within the funding

available– Provide funding for establishment & development of new

services– Avoid the unnecessary duplication of services, thus

promoting clinical quality and cost effectiveness

Scottish Genetics Laboratory Consortium• NSD funds the Scottish Genetics Laboratory Consortium

• Consortium determines which genetic tests the molecular genetic & cytogenetic laboratories perform

• Consortium ensures that Scotland’s four regional genetics services work together to avoid duplication and to provide genetic testing for a wide range of conditions effectively

• Consortium aims to:– Openly discuss and agree workload distributions in order to make the

most effective use of available resources– Consider recommendations by UK GTN and GenCAG to ensure that

all tests undertaken are evidence-based

• Tests not available in Scotland are sourced from England

Review of Genetics in Relation to Healthcare (Calman Review, 2006)

• Calman Review made a number of recommendations about genetic healthcare in Scotland, with regards to staffing of services, public engagement, clinical & laboratory services

• As a result, significant funding was made available to upgrade facilities and to recruit more clinical, medical, scientific, nursing and administrative staff

• Extended the ‘consortium’ approach to include cytogenetic services

• Resulted in workflow balancing leading to lower reporting times

• Generation Scotland was established for population-wide studies. So far, 30,000 people have given DNA samples for analysis as a result of this programme

Ethical discussion time…• Working in small groups of 3 or 4, you each be

different ethical dilemmas faced in the provision of genetics healthcare

• Write down the key ethical issues and prepare to tell the class– 1. Background of the case study– 2. What is the ethical dilemma– 3. What would your group do in this situation?

• There might be some disagreement in your group (this is a good thing), so take all views in to account

10 minutes group discussion

The reality of ethical issues – When in practice might you need to consider these issues?

• Confidentiality

• Privacy

• Truth telling

• Duty of care

• Right to know – versus – right not to know

Ethics Models

• Utilitarian – best for the majority– e.g. what is best for the community?

• Code of Conduct – doing your duty– e.g. sometimes not always the ‘best’ option

• Virtue Ethics– e.g. how does a person act?

Further Readingwww.scottish.parliament.uk/parliamentarybusiness/54023.aspx