WEEK 10 - Genetics in Practice Issues - Week 10

BSN502 Health Law and Ethics in the UAE
PRACTICE ISSUES:
Practice Issue - Genetics/HIV and Ethics
Semester 1/2023-2024
fchs.ac.ae
Learning Outcomes
By the completion of this lecture, and tutorials, the

student is expected to be able to:
1. Discuss issues and dilemmas associated with
technologies affecting reproduction, IVF (In vitro
fertilization), and ART (Artificial insemination).
2. Discuss the types of assisted reproductive technology.
2. Explore the ethical dilemmas related to genetic

screening, testing, and counseling.
Original material supplied by Health Protection Scotland. Responsibility for the editing and use of these materials lies with the individual and not Health Protection Scotland or Healthcare A2Z.
fchs.ac.ae
Learning Outcomes
1. Examine the conflicts in patients' rights versus the

rights of others with regard to HIV.
2. Apply ethical concepts to nursing practice for a person
with HIV.
3. Identify issues and dilemmas associated with research
into controversial technologies including genetic
engineering, cloning
4. Describe the nursing considerations for patient care in
the midst of technology.
fchs.ac.ae
Introduction:
 Advances in technology affect nursing and health care in
other arenas as well.
 Examples of such technologies are Reproductive

Technology, Genetic Diagnosis, Engineering, and
Screening.
 Nurses who work with patients whose care involves

such technologies need to be aware of potential
ethical issues associated with their use, as well as the
benefits of such interventions.
© 2006, original content developed by Healthcare A2Z, www.healthcareA2Z.org fchs.ac.ae
Infertility and Assisted
Reproductive Technology
 Infertility is defined as a woman’s inability to become

pregnant after the couple has tried for 1 year (CDC,2007).
 Assisted Reproductive Technology (ART): The term ART

refers to the handling and management of sperm and eggs
and every kind of fertility treatment or drug used only for the
purpose of retrieving eggs to be used in the treatment
(CDC,2001 a).
REPRODUCTIVE TECHNOLOGY:
On July 25, 1978, Louise Joy Brown, the world's first

successful "test-tube" baby was born in Great Britain.
Assisted Reproductive Technology (ART)
In Vitro In Vivo
In Vitro Fertilization (IVF) Artificial Insemination:

A human egg is removed from the Introduction of sperm into the
woman and fertilized by sperm in female’s uterus or cervix for
the laboratory, then implanted achieving pregnancy.
into the uterus. Types:
 Intracervical Insemination.
 Intrauterine Insemination.
 Intratubal Insemination.
IN VITRO FERTILIZATION (IVF)
 The process of IVF is considered commonplace

and utilized by infertile couples around the world
(Basenberg,2004).
 Because of infertility, more than one million babies have

been born worldwide with Assisted Reproductive
Technology (ART) since 1978 (Gosden, Trasler,
Lucifero, & Faddy, 2003).
 Currently, in many Western countries, ART accounts for

1-3% of annual births.
IN VITRO FERTILIZATION (IVF)
 IVF is one example of reproductive

technology whereby fertilization
occurs outside the body.
 A human egg is removed from the

woman and fertilized by sperm in
the laboratory, then implanted into
the uterus.
IN VITRO FERTILIZATION
Sperm Sporting or Gender Selection:

 Enables persons to create the kind of child they want
to have or avoid having for family balancing or to
prevent X chromosome-linked or other genetic
diseases (Bauer,2004,Harris & Holm,2003).
 The medical procedure through which sperm sporting

is accomplished is called preimplantation genetic
diagnosis (PGD).
IN VITRO FERTILIZATION
 In UAE, the use of technology for fertility treatment for

women or the implanting of the embryo in the woman’s
womb without the written consent of both the husband
and wife is not allowed
31 December 2008 by the President, His Highness Shaikh Khalifa

bin Zayed Al Nahyan - ABU DHABI
Reproductive Technology –
Ethical Arguments
 Opponents of assisted reproduction
procedures argue that the ‘manufacturing‘
of babies violates natural law theory; the natural and
appropriate way of procreating.
 They claim that it constitutes an experiment on a non-

consenting person (the fetus), exposing it to risks not in
its best interests.
 Proponents of reproductive technology say it is a more

ethical and humane approach to overcoming
reproductive problems than leaving matters to chance.
The ethical principles
applied on IVF:
 Autonomy: an individual or couple has the right to

decide to use the ART to procreate.
 Beneficence: it is morally justified to use the technology

as it relieves family shame and disappointment of being
infertile.
The ethical principles
applied on IVF:
 Non-maleficence: a dilemma may occur if the couple has
to do a procedure to determine if the fetus is healthy or
genetically malformed.
 The harm to the fetus versus the harm to the

mother/couple if the fetus is malformed.
 Justice: all people should be able to access this

technology.
 Issues arise when dealing with single women, divorced
couples, or gay couples and whether they also should
have the opportunity to procreate.
Other Reproductive Services:
Genetic Diagnosis, Engineering, Screening:
 To date, 5000 genetic diseases have been discovered,

increasing daily (Munson, 2004).
 DNA testing and new technologies can identify some of

these diseases in the fetus
 E.g. Down syndrome can be detected at 16 to 18 weeks of

gestation in a blood sample from the pregnant woman or
by amniocentesis.
GENETIC DIAGNOSIS
 Genetic diagnosis is usually done within an in

vitro fertilization program
 biopsy of the embryo to determine the
presence of genetic flaws and gender
prior to implantation.
 Presently aimed at couples who have a high risk of

conceiving a child with a serious genetic disorder,
 intention - only embryos free of genetics flaws would
be implanted.
GENETIC ENGINEERING
 Genetic engineering involves changing

the genetic make-up of an individual for
the purpose of improving health.
 E.g., stem cell research uses undifferentiated embryonic

cells that can be implanted into tissue which then
generates or differentiates into that specific tissue.
 Stem cells could replace unhealthy and damaged cells in

diabetes, Parkinson’s, cancer etc.
Ethical Issues with
Genetic Engineering
 A controversial and fascinating international project -
“Human Genome Project”
 Aims to map the human genetic DNA structure of

individuals to identify certain physical and behavioral
characteristics that could be manipulated for the health of
generations to come (Berglund, 2007).
 parents could pick the gender of their child, and

particular attributes such as beauty, intelligence,
and athletic ability.
Ethical Issues with
Genetic Engineering
 Opponents warn that a project of this nature demonstrates
disrespect for the unique and diverse characteristics of
human beings.
 Most people believe

 genetic information is unique and ought to receive
special protection;
 genetic information is sensitive and demands strict
privacy.
Ethical Issues with
Genetic Engineering
There are widespread concerns about the availability of
genetic information and potential discrimination or unequal
treatment if ‘unsatisfactory results’ are discovered are real and
being debated.
 Should we produce embryos for the sole purpose of

harvesting the cellular material for the advancement of
medical science that could greatly benefit society?
Ethical Issues with
Genetic Engineering
 Is it right to use human tissue for other ends?
 Many religions strongly oppose this professing - it

violates individual life potentiality (personhood).
GENETIC SCREENING:
 Involves professional counseling of individuals or couples
about their risk for genetically linked diseases
(Munson,2004).
Genetic screening technology helps to detect:
 carrier status (recessive gene).
 an inherited gene that causes disease (dominant gene).
 genetic markers that indicate susceptibility to certain
diseases.
 anomalies in the fetus and in cell material before a
fertilized cell is implanted into the uterus (IVF)
GENETIC SCREENING:
 Prenatal Genetic Diagnosis (PGD) is accomplished through

an examination of the fetal DNA.
 PGD performed through:

 amniocentesis at 15 weeks of pregnancy
 by Chorionic Villus Sampling (CVS) between 10 and 12

weeks of pregnancy
 blood test for alpha fetoprotein, performed 15 to 20

weeks after conception - predicts spina bifida or
anencephaly
GENETIC SCREENING:
Implications for Nursing:
 Technologies can lead to the imposition of a skewed or
harmful definition of what is normal regarding human traits,
and what is considered abnormal or undesirable.
 Nurses must be perceptive to their own moral values.
 Need good and well-developed communication and

counseling skills
 Nurses need to ensure individuals, couples, and

families have adequate and accurate information to
make choices.
Message from H.H. Sheikh Nahyan Bin
Mubarak Al Nahyan, Minister of Higher
Education and Scientific Research
- UAE :
“ I’m pleased to say that the UAE Genetic

Diseases Association, under the leadership of
Dr. Mariam Matar, has taken a major initiative
in recognizing and addressing genetic
diseases prevalent in our population".
Week 18:Topic
Genetics/HIV and Ethics
Dr. Maryam Matar

• Dr Matar launched a series of outreach
initiatives, including ‘UAE Free of
Thalassemia 2012’.
• She also launched the UAE Down’s Syndrome
Association in 2005 and the UAE Genetic Diseases
Association in 2006.
• She was the first Emirati woman to hold the director

general Dubai Government, Community Development
Authority. She is the Chairwoman of Dubai Cares.

HIV TESTING:
HIV Pandemic:
 Women make up half of those persons living with
HIV/AIDS
 Mother-to-child transmission accounts for more

than 90% of all HIV infections in infants and
children
 WHO (2009) suggests 90% of HIV cases are sexual

transmission
 60-70% of these are heterosexual cases.

HIV TESTING:
Ethical Issues with HIV

 The transmission of human
immunodeficiency virus (HIV) is a global
concern.
 HIV is a virus that infects the cells of the human

immune system (mainly CD4-positive T cells and
macrophages) and destroys or impairs their function.
 AIDS is the advanced stage of HIV
HIV TESTING:
Ethical Issues with HIV cont...

 HIV is found in body fluids, semen, vaginal fluids, and
breast milk.
 HIV is transmitted through:
 Unprotected sex with an infected person
 Using contaminated needles
 Blood transfusion with infected product
HIV TESTING:

 An infected mother during pregnancy, childbirth,
breast feeding
 Exposure through needle stick injury or blood splash

(Joint United Nations Programme on HIV/AIDS 2008):
HIV TESTING:
 Most people don’t know they are infected

with HIV
 It takes up to 12 weeks for the body to make

antibodies (seroconversion) and it is during
this time that the infected person is most
contagious (www.unaids.com, 2008; www.
who.int/hiv.com 2009)
HIV TESTING:
Ethical Concerns:
 Two (2) characteristics of HIV concern people and
underlie ethical dilemmas:
i. It is infectious with no known cure.

ii. The assumptions made about lifestyle.
Ethical conflicts with HIV emphasize:
 The rights of the patient vs. the rights of others.

 The duties of health professionals.
HIV TESTING:
Ethical Concerns:
The Issue of Contagion - Mandatory Testing
 Since HIV is transmissible and terminal, one way of

dealing with the risk is mandatory testing.
 HIV testing has largely been a voluntary process,

emphasizing the principle of autonomy.
 In health care settings, testing for HIV requires consent.
 Parents must give consent for the newborn baby/child to

be tested.
HIV TESTING:
Ethical Concerns:
The Issue of Contagion- Mandatory Testing cont...
 Some argue that in clinical situations, mandatory testing
ought to apply because of the serious risk HIV poses to
healthcare workers and others;
 the rights of others (societal beneficence) should override

the sovereignty of the individual.
 In the United Arab Emirates is one such country.
 HIV is a reportable and deportable condition (Federal

Law 21, Centre of Disease Control, Health Authority of
Abu Dhabi).
HIV TESTING:
Ethical Concerns:
The Issue of Discrimination
 Certain lifestyle behaviors are associated with
HIV.
 These behaviors are often perceived as immoral

by society and can result in social stigma.
 People who contracted the disease may

experience discrimination based on assumptions
about lifestyle.
HIV TESTING:
The Issue of Discrimination
Health professionals show discrimination by: example:

 Refusing to provide care
 Providing a lesser quality of care that others without
an infection would receive .
 Testing and disclosing HIV status without consent
 Verbally abusing patients
 Isolating them
 Burning bed linen on discharge
 Using gloves for all interactions, even non physical
contact
Nyblade at el. (2009)
HIV TESTING:
The Issue of Discrimination cont.

Discrimination from Fear
 The fear or experience of discrimination
discourages many people from testing, seeking
the health care they need, or maintaining the
treatment plan
 Contracting the disease from occupational

exposure to blood or bodily fluids is still a
concern for healthcare professionals.
HIV TESTING:
The Issue of Discrimination cont...

Discrimination from Fear cont...
 “It is estimated that needle stick injuries with an HIV-
infected sharp carry a 0.4 % risk of HIV transmission
and development of antibodies” (Berglund 2007, p.
105).
HIV TESTING:
Right to Refuse Care

 Can nurses refuse to care for a patient with HIV?
 Nurses are professionally committed by way of contract

or covenant with society to perform his/her function of
giving nursing care even if it puts them at risk, so morally
the duty to provide care ought to be upheld.
 Extra care is required when caring for patients with HIV
The Health Care Provider is HIV Positive
 For example, one nurse acquired HIV after being stuck by
an IV needle while the patient was having a seizure (Fry &
Veatch 2000, p. 288)
 What if the individual with HIV is a health care provider

such as a surgeon or dentist who may be at higher risk for
transmitting HIV from invasive procedures?
 Must a nurse reveal if he/she is HIV positive because of the

potential to transmit the disease when providing intimate
care?
Do they not have a right to privacy?
Ethical Issues of Cost /Allocation of Resources
 Is treating people with HIV a good use of resources?
 Who has the highest claims to resources?
 Need to think of the principles of justice and

beneficence
Implications for Nurses Concerning HIV
 Nurses should discuss their fears and examine their own
beliefs about HIV and persons with the disease.
 Nurses must not show disapproval of a person with HIV

based on lifestyle; that is a moral judgment and shows
lack of respect for them as a person.
 Nurses must avoid labeling persons with HIV or holding

them responsible.
 Nurses need to be knowledgeable about HIV and be

competent when caring for a person with this illness.
Implications for Nurses Concerning HIV
Nurses must:
 educate people, particularly those with high risk behaviors,
about how HIV is contracted and prevented.
 advise and educate patients about HIV treatments
 Nurses must use universal precautions appropriately when

caring for patients with HIV just as they would patients with
Hepatitis C.
CONTROVERSIAL TECHNOLOGIES:
 Some biotechnologies raise serious ethical concerns even

in the research phase.
CLONING:
 Is the process of creating a cell or an entire organism that
is identical in every way to another.
 Cloning can be both useful and damaging for human

health and both advantages and disadvantages need to be
considered.
CLONING:
 The overall stance within nursing and other organizations

that promote health and human rights is that human
cloning is ethically unacceptable and violates the right
to ones unique genetic identity, human dignity, and
integrity ( ANA,2000,Anderson & Rorty,2001).
CLONING:
Human Cloning, Research Banned in UAE
31 December 2008 by the President, His

Highness Shaikh Khalifa bin Zayed Al
Nahyan - ABU DHABI :
 Human cloning and research and

experiments related to it, as well as
use of technology for the purpose,
have been banned in the country.
Summary:
 The use of technology in health care has prompted the
need to address important ethical questions regarding
life, death , and allocation of resources.
 Assisted Reproductive Technology(ART) has been a

miracle and a relief for women or couples who
experience infertility.
 Preimplantation Genetic Diagnosis (PGD) is a

procedure that allows implantation of a selected
gender or a perfect or near perfect embryo.
Summary:
 Many genetic diseases can be detected though gene
technology, screening, and genetic diagnosis
 .
 Women who are infected with HIV need to have a full
range of HIV testing and counseling services available for
them, although they may have a moral right not to be
tested
 Appropriate utilization of health care technologies requires

that health care providers, patients, and families
understand the purposes, benefits, and limitations of
specific technologies.
Review
Which of the following is True about genetic engineering?
a. Its aim is the early detection of genetic diseases.

b. It respects normal human structure and rights totally.
c. It interferes with the natural physiologic life of humans.
d. It only helps to improve human health
Review
1. Nurses face moral conflicts when dealing with patients
seeking assisted reproduction. These conflicts may include
a. Whether embryos should be stored for research

purposes or destroyed.
b. Whether a couple should be able to choose the gender
of the fetus.
c. When human life begins.
d. All options given above.

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BSN502 Health Law and Ethics in the UAE

Practice Issue - Genetics/HIV and Ethics

By the completion of this lecture, and tutorials, the

2. Discuss the types of assisted reproductive technology.

2. Explore the ethical dilemmas related to genetic

1. Examine the conflicts in patients' rights versus the

 Examples of such technologies are Reproductive

 Nurses who work with patients whose care involves

 Infertility is defined as a woman’s inability to become

 Assisted Reproductive Technology (ART): The term ART

On July 25, 1978, Louise Joy Brown, the world's first

In Vitro Fertilization (IVF) Artificial Insemination:

 The process of IVF is considered commonplace

 Because of infertility, more than one million babies have

 Currently, in many Western countries, ART accounts for

 IVF is one example of reproductive

 A human egg is removed from the

Sperm Sporting or Gender Selection:

 The medical procedure through which sperm sporting

 In UAE, the use of technology for fertility treatment for

31 December 2008 by the President, His Highness Shaikh Khalifa

 They claim that it constitutes an experiment on a non-

 Proponents of reproductive technology say it is a more

 Autonomy: an individual or couple has the right to

 Beneficence: it is morally justified to use the technology

 The harm to the fetus versus the harm to the

 Justice: all people should be able to access this

Genetic Diagnosis, Engineering, Screening:

 To date, 5000 genetic diseases have been discovered,

 DNA testing and new technologies can identify some of

 E.g. Down syndrome can be detected at 16 to 18 weeks of

 Genetic diagnosis is usually done within an in

 Presently aimed at couples who have a high risk of

 Genetic engineering involves changing

 E.g., stem cell research uses undifferentiated embryonic

 Stem cells could replace unhealthy and damaged cells in

 Aims to map the human genetic DNA structure of

 parents could pick the gender of their child, and

 Most people believe

 Should we produce embryos for the sole purpose of

 Is it right to use human tissue for other ends?

 Many religions strongly oppose this professing - it

 Prenatal Genetic Diagnosis (PGD) is accomplished through

 PGD performed through:

 by Chorionic Villus Sampling (CVS) between 10 and 12

 blood test for alpha fetoprotein, performed 15 to 20

 Nurses must be perceptive to their own moral values.

 Need good and well-developed communication and

 Nurses need to ensure individuals, couples, and

“ I’m pleased to say that the UAE Genetic

Dr. Maryam Matar

• She was the first Emirati woman to hold the director

© 2006, original content developed by Healthcare A2Z, www.healthcareA2Z.org fchs.ac.ae

 Mother-to-child transmission accounts for more

 WHO (2009) suggests 90% of HIV cases are sexual

 60-70% of these are heterosexual cases.

Ethical Issues with HIV

 HIV is a virus that infects the cells of the human

 AIDS is the advanced stage of HIV

Ethical Issues with HIV cont...

 HIV is transmitted through:

 Unprotected sex with an infected person

 Using contaminated needles