3014MSC Ethical Issues in Genetic Testing

Health Centre for Genetics Education, Some Ethical Issues in Human Genetics and Genomics, Retrieved on 2nd April 2013, From www.genetics.edu.au

Genetics Home Reference: What is Genetic Testing, Retrieved on,April 2nd 2013, from http://ghr.nlm.nih.gov/handbook/testing/genetictesting

Policymic, Prenatal Genetic Testing is an Unethical Form of Playing God, Retrieved on 5th April 2013, from http://www.policymic.com/articles/13549/prenatal-genetic-testing-is-an-unethical-form-of-playing-god

Medscape News Today, Why Genetic Testing May Lead to Ethical Dilemmas, Retrieved on 12th April 2013, from http://www.medscape.com/viewarticle/505222_4

Government of Western Australia Department of Health, Prenatal Screening and Diagnostics Test, Retrieved on 2nd April 2013, from http://www.health.wa.gov.au/docreg/Education/Prevention/Genetics/HP3131_prenatal.pdf

Mills, Haga & Ginsburg 2012, Genetic Testing: Clinical and Personal Utility, viewed 21 April 2013, via virtualmentor database.

Agar, Nicholas. "Designer Babies: Ethical Considerations." Actionbioscience.org. Apr. 2006. American  Institute of Biological Sciences. 24 April. 2012 <http://www.actionbioscience.org/biotech/agar.html>.

National Health and Medical Research Council, 2009. Use and disclosure of genetic information to a patient’s genetic relatives under section 95AA of the Privacy Act 1988 (Cth), Retrieved on 3rd April 2013, from

www.privacy.gov.au/materials/types/download/9446/7015.

U.S. Department of Health, Genome Program's Biological and Environmental Research Information System (BERIS)., 2008. Genetics Privacy and Legislation, Retrived on 3rd April 2013 from http://www.ornl.gov/sci/techresources/Human_Genome/elsi/legislat.shtml.

What are the main ethical issues?

Advantages of Prenatal Testing

Key ethical issues we will cover today relate to:

There are many ethical concerns surrounding genetic testing and some of these include but not limited to;

• Privacy and confidentiality,
• fairness in the use of genetic information
• psychological impacts
• religious beliefs
• limitations of genetic tests
• Abortion and right to

(HCGE)

• Ability to treat some disease in the uterus such as neural tube defects
• Antenatal care preparation
• The ability to plan and contemplate later on-set disease

(MEDSCAPE, 2013)

How do we conduct genetic tests?

Prenatal testing

New born screening

Privacy, confidentiality and discrimination

Ethical issues in prenatal testing

Prenatal Testing

• Eugenics- creation of an ideal community by eradicating the disadvantaged individuals
• What happened to the revolutionary human equality principle?
• Designer babies: To what extent will this technology be used?
• Abortion- Who decides the worthiness of a life?

• Genetic tests are conducted by a health care professional and are relatively non-invasive and simple procedures that carry little risk
• A sample can be taken from hair, skin, blood or buccal smear
• The most invasive procedure and one that carries the most risk prenatal testing and in taking a sample of amniotic fluid

• Often referred to as “Playing of God”
• Easily provokes number of ethical and moral dilemmas
• Screening for any chromosomal and structural anomalies present in the embryo
• Diagnostic test is recommended if one the screening tests shows “at increased risk” pregnancy.

(GWADH,2013)

False-positive and False-negative

Prenatal

Testing

What types of Genetic testing are there?

• Multiple marker blood test detects about 80% of neural tube defect and only about 60% of pregnancies in which Down syndrome is present
• False-positive results often lead to further diagnostic testing which is invasive and increases risk of miscarriages
• False-negative results lead to blame of healthcare system and negative parental attitude towards the newborn

(MEDSCAPE, 2013., POLICYMIC, 2013.)

• Prenatal diagnostic testing
• New born screening
• Presymptomatic predictive testing
• Conformational diagnosis
• Forensic and paternity testing
• Carrier testing
• Pre implantation testing

Introduction

What methods for genetic testing?

• Molecular – Study specific genes to look for mutations
• Chromosomal – Look at whole chromosomes to see if there are any changes that may cause a genetic disorder, such as, extra chromosome.
• Biochemical – look at proteins in the DNA in which abnormalities can indicate a genetic disorder
• (GNR, 2013)

Why is genetic testing used?

Genetic testing is used in the medical world to analyse DNA for potential gene mutations that could help determine an individuals chance of developing or passing on a genetic disorder.

What is Genetic Testing?

Ethical Issues in

Genetic Testing

Genetic testing is a range of tests that examine DNA, it’s chromosomes and specific genes and proteins to determine the genetic makeup of an individual

(GNR, 2013)

By Emina Ferhatovic , Matthew

Gardner, Roy Robson and Pretoria Wilson

Conclusion

• Genetic testing can show a higher risk for developing treatable diseases such as cancer or that you carry a gene for an untreatable, fatal disorder such as HD can have negative social consequences, and a emotional changes quality of life for the individual and their family.
• The choice to undergo genetic testing is a very personal one.
• A person's decision depends on various factors, including the perceived prevent ability and treat ability of the disorder and one's ability to make constructive life changes with the information one gains from testing.
• Pre Nadal testing can an insight in to there child's life and therefore it can also lead to decisions to be made in the future regarding the child's life.
• Testing can help people make family planning decisions and other life choices, like when to retire or how much money to put away for the future.
• There will always be ethical issues surrounding the idea and realism of genetic testing but with proper management of medical records and certain guidelines these issues can be lessened.

New Born

Screening

Ethical Issues Surrounding Genetic Testing in Adults

Newborn screening

The process of checking a baby for genetic disorders after birth

Most are performed using a small blood sample from the child (E.g. Heel-prick test)

Checks for the presence/absence of specific genetic disorders

Doesn’t work as diagnosis of a disease, just as a check if more tests are needed.

What are our responsibilities?

As allied heath professionals we must:

• Abide buy Australian privacy laws and acts
• Keep patient confidentiality
• Allow discussion to take place between you and the patient once genetic testing has been completed , this can also be used to determine options, that the patient had.
• If needed a genetic counsellor can be advised.

New Born screening: Pros

Privacy & Confidentiality

• Most found by a quick heel-prick test

• Some conditions require immediate attention or attention in the near future. This can be resolved if identified early

• While uncomfortable for the baby, the compulsory tests are a relatively painless process and over quickly for the baby.

What Has been done about it? (Australia)

Privacy

Very important (due to discriminatory factors will be discussed further on)

Should be kept in same level of privacy as other sensitive medical records

Information could potentially be used against the person undergoing genetic testing

Confidentiality

Doctor-patient confidentiality is of upmost importance from a health professionals point of view to keep there patient records confidential.

No information can/should be shared unless necessary and adheres with the Australian Privacy act.

In Australia different privacy acts (National Privacy Principle 2.1 and 95AA of the Privacy Act) have been put in place to increase the privacy and confidentiality of the patents precious genetic records, but also allow certain acceptation's if crucial to the patient or there related family.

The Key points of these are:

The health service provider reasonably believes that there is a serious threat to the life, health or safety of a genetic relative of the patient and the use, or the disclosure to the genetic relative, is necessary to lessen or prevent that threat of serious threat to life, health or safety of the relative and the use or disclosure is necessary to lessen or prevent that threat.

Disclosure of genetic information is not allowed to anyone other than the patient's genetic relatives use or disclosure of genetic information by a health practitioner without the patient's consent must be conducted in accordance with the National Health and Medical Research Council guidelines. These guidelines must be approved by the Privacy Commissioner under section (see below)

(NHMRC, 2009)

New Born screening: Cons

What Has been done about it? (USA)

Discrimination potential?

• Insurance
• Workplace (employment)
• Relationship

• In the US Accountability Act of 1996 (HIPAA) was the first federal law to provide protections against genetic discrimination
• Specifically, under HIPAA, insurance companies were not prevented from charging higher rates to customers based on genetic information
• Also the Genetic Information Nondiscrimination Act (GINA), was signed into law in May 2008 (Allison, 2008). It was designed to furthermore prohibit the use of genetic information in health insurance and employment.

(U.S. Department of Health, 2008)

• All but the heel-prick test costs a significant sum of money (Agar, Nicholas 2006)

• The records of the test could affect the child’s later life (E.g. When applying for insurance) (Mills, Haga & Ginsburg 2012).

• None of the tests are pleasant for the baby

• If the chance to for the child to get a disease or not is presented, it may create a false sense of fear/security

Due to it being uncontrollable it is unfair to discriminate against a person's genetic predispositions.