UNIT-II

INTRODUCTION TO BIOETHICS

 The terms bioethics and healthcare ethics sometimes are used interchangeably.
 Bioethics, born out of the rapidly expanding technical environment of the 1900s, is a
specific domain of ethics focused on moral issues in the field of health care.
 During World War II President Franklin D. Roosevelt assembled a committee to improve
medical scientists’ coordination in addressing the medical needs of the military (Jonsen,
2000).
 As often happens with wartime research and advancements, the work aimed at addressing
military needs also affected civilian sectors, such as the field of medicine.

FRAMEWORK FOR ETHICAL DECISION MAKING

The Hastings Center Model:
The Hastings Center ethical decision making model was developed at the Hastings Center.
It is a six-step process that involves
(1) identifying the ethical problems raised in the case,
(2) gathering and assessing all the facts that are relevant to the decision,
(3) identifying who has a stake in the decision,
(4) identifying the values at stake in the decision,
(5) identifying possible solutions and choosing the better solutions, and
(6) evaluating the process of decision making itself
Step 1: Identifying the Ethical Problems Raised in the Case:
1. The first step involves identification of the ethical problems the case raises.
2. Once the problems have been identified, one must decide which problem is to be
considered.
3. In other words, what is the ethical question the actors in the case must decide?
4. Clearly, many different kinds of questions are raised in bioethical cases.
5. Some are ethical questions, while others are legal, medical, social, or psychological
questions.
6. Each of these types of questions requires a different type of analysis, however.
7. Thus, in identifying the ethical question to be analyzed one must make certain that it is a
bona fide ethical question.
 8. This is not always an easy task. Certain key terms may suggest, however, when a
question is an ethical question.
9. These terms include: "right" ( in terms of entitlement), "responsibility", "duty", "ought",
and "should".
10. A common element to ethical questions is that they raise concerns about what is
appropriate conduct in a given situation and/or directly refer to the rights or interests of
others.
Step 2: Gathering and Assessing all Relevant Facts:
1. The second step in the decision making process involves assessing the facts that are
available to the decision makers.
2. At this step it is important to address the non-ethical issues raised within the case.
3. For example, one may need to know the legal constraints of the decision.
4. Furthermore, the likely legal, medical, or social consequences of a proposed course of
action must also be considered.
5. In addition to the facts that are readily available, a decision maker should also consider
what factual information is not presented in the case but that is important to the decision
and how this information can be obtained.
Step 3: Identifying the Stakeholders:
Step 4: Identifying the Values:
1. The third and fourth steps involve identifying the stakeholders and the values at stake in
the decision.
2. Stakeholders include those individuals who will be affected by the decisions to be made.
3. Stakeholders could include individual persons (both existing and future persons),
collections of persons, such as societies and organizations, nonhuman beings, and
entities, such as the environment.
4. Values, on the other hand, are concepts, goals, or standards that are important to consider
when choosing between competing courses of action.
5. These include, but are not limited to, beneficence, justice, autonomy, truth telling, and
interpersonal relationships.
6. While each of these values should be considered in every facts of the case, as they will
vary in their importance depending upon the circumstances and case at hand.
Step 5: Identifying Possible Solutions and Choosing the Better Solutions:
1. The fifth step is to develop and assess the options that are available to the decision
makers.
2. At this point, one must consider what could be done in this case. Students are asked to be
as creative as possible in coming up with a list alternative solutions to the problem, even
if these include options that are obviously ethically unacceptable.
 3. The next stage of this step is to consider what should be done.
4. At this point one identifies those options that are ethically acceptable by eliminating the
unacceptable or unjustified options from the list of possible solutions.
5. It may be that a range of actions are acceptable. In that case, those options that are
preferable can be identified and justified in terms of the values that these options support.
Step 6. Evaluating the Decision Making Process:
1. The final step is to consider the decision making process as a whole.
2. Was the process fair? Were the interests of all the stakeholders represented or
considered?
3. In many cases, the solution that results from this stepwise process is the same as one's
initial or intuitive belief about what should have been done in the case.
4. In these cases, therefore, the value of the decision making model is not found in the
solution that came as a result of using the model, rather it is in the justification for the
proposed solution that the model provides.

ETHICAL ISSUES IN BIOTECHNOLOGY - BENEFITS AND RISKS

Ethical issues in biotechnology are specific issues that are morally wrong. Such issues can affect
the fundamental moral principle that creates a massive conflict with the normal working of the
society. We have divided the ethical issue related to biotechnology into specific subcategories.
These groups are-

 Socio-economic issues
 Cultural issues
 Legal issues
 Environmental issues

Religious issues
There are several principles relating to ethics, medical ethics, scientific and technological ethics,
justice and human dignity and its related ethics, and more of such ethical issues in
biotechnology.

Socio-economic issues
1. The scientific community and society promise significant advancement in biotechnology
but never yours the harmlessness regarding socio-economic life.
2. Such arguments and interactions are some of the most problematic ones to be considered
out there.
 3. Social-economic issues interfere with the natural way or the initial god’s process of
learning the environment. Search issues could be related to the cultural backgrounds, and
also it could be on the level of different public awareness.
4. The development of technology destroys the environment, which is a tricky thing.

Cultural issues
1. Different cultures have different thoughts and values.
2. These values are the reflection of their long-lasting concept.
3. Sometimes biotechnology hinders these cultural concepts, which is not something to look
out for.
4. Biotechnology has given us everything to improve the quality of life.
5. Still, if one interferes with the cultural aspect of the human, there can be ethical issues
arising from such matters.

Environmental issues
1. Environmental issues are also severe to look out for regarding ethical issues in
biotechnology.
2. Ecological issues might arise when one destroys the living flora or the fauna.
3. Gene manipulation of different crops to produce hybrids is one of the most problematic
issues. Even for most biotech experiments, other organisms are made to sacrifice.
4. Due to such harsh sacrifices, numerous plant and animal species have been mutated
regularly.
5. Crops such as sugarcane have gone through genetic mutation and recombination, which
has continuously destroyed the original constituent of the crop.
6. Due to the prolonged mutation, these crops get mutated for a generation.
7. The genes pass from one progeny to another, degrading the quality of the organism.

Religious issues
1. One of the most faced issues with biotechnology is that it hurts people’s sentiments on a
religious basis.
2. The cow is considered to be very sacred by Hindus.
3. People pray for the animals in countries such as India.
4. Many plants are considered very sacred.
5. Religious issues can be exceptionally sentimental and personal, and people get free
attached to such matters.
6. Some holy plants and animals are blessed and very sacred to lots of communities.
7. These communities protect the organisms at any cause.
8. Killing these organisms is a matter of deep concern.
Other legal issues
1. Special laws protect many plants and animals.
2. These laws protect these animals and plants from being disturbed to overcome.
3. Many sacred plants and animals are manipulated for other experimental uses from their
natural home.
4. Sometimes due to the limitation of the organism reacting to biotechnology, the choice
becomes very harsh.
5. In such a case, these organisms are used, but this can create a severe law issue if the
sacrifice for the mutation goes wrong.
6. Different governments have different restrictions and rules regarding these species and
their uses.
7. Hence, a scientist must be aware that it must be legal to operate according to the
country’s laws before using specific species for Biotechnology.

GENETIC ENGINEERING AND BIO WARFARE

1. Biological weapons are designed to spread disease among people, plants, and animals
through the introduction of toxins and microorganisms such as viruses and bacteria.
2. The method through which a biological weapon is deployed depends on the agent itself,
its preparation, its durability, and the route of infection.
3. Attackers may disperse these agents through aerosols or food and water supplies.
4. Although bioweapons have been used in war for many centuries, a recent surge in genetic
understanding, as well as a rapid growth in computational power, has allowed genetic
engineering to play a larger role in the development of new bioweapons.
5. In the bioweapon industry, genetic engineering can be used to manipulate genes to create
new pathogenic characteristics aimed at enhancing the efficacy of the weapon through
increased survivability, infectivity, virulence, and drug resistance.
6. While the positive societal implications of improved biotechnology are apparent, the
“black biology” of bioweapon development may be “one of the gravest threats we will
face”

Techniques to Enhance Efficacy of Bioweapons

Scientists and genetic engineers are considering several techniques to increase the efficacy of
pathogens in warfare.
1. Binary Biological Weapons
  This technique involves inserting plasmids, small bacterial DNA fragments, into the
DNA of other bacteria in order to increase virulence or other pathogenic properties within
the host bacteria.

2. Designer Genes

 According to the European Bioinformatics Institute, as of December 2012, scientists had

sequenced the genomes of 3139 viruses, 1016 plasmids, and 2167 bacteria, some of
which are published on the internet and are therefore accessible to the public.
 With complete genomes available and the aforementioned advances in gene synthesis,
scientists will soon be able to design pathogens by creating synthetic genes, synthetic
viruses, and possibly entirely new organisms

3. Gene Therapy

 Gene therapy involves repairing or replacing a gene of an organism, permanently

changing its genetic composition.
 By replacing existing genes with harmful genes, this technique can be used to
manufacture bioweapons.

4. Stealth Viruses

 Stealth viruses are viral infections that enter cells and remain dormant for an extended
amount of time until triggered externally to cause disease.
 In the context of warfare, these viruses could be spread to a large population, and
activation could either be delayed or used as a threat for blackmail

5. Host-Swapping Diseases

 Much like the naturally occurring West Nile and Ebola viruses, animal viruses could
potentially be genetically modified and developed to infect humans as a potent
biowarfare tactic.

6. Designer Diseases

 Biotechnology may be used to manipulate cellular mechanisms to cause disease.

 For example, an agent could be designed to induce cells to multiply uncontrollably, as in
cancer, or to initiate apoptosis, programmed cell death.

7. Personalized Bioweapons
  In coming years it may be conceivable to design a pathogen that targets a specific
person’s genome.
 This agent may spread through populations showing minimal or no symptoms, yet it
would be fatal to the intended target.

ETHICAL IMPLICATIONS OF REPRODUCTIVE & THERAPEUTIC CLONING

Reproductive cloning
Somatic cell nuclear transfer (SCNT) is the process in which the nucleus of a somatic cell of an
organism is transferred into an enucleated oocyte. Cloning for reproduction, that is, the
application of SCNT to create a human embryo that shares all of its nuclear genes with the donor
of the human somatic cell, has been debated as having possible clinical benefit. It has been
suggested that reproductive cloning might be ethically acceptable to assist individuals or couples
to reproduce and to create a compatible tissue donor.
Reproductive cloning involves the implantation of a cloned embryo into a real or an artificial
uterus. The embryo develops into a fetus that is then carried to term. Reproductive cloning
experiments were performed for more than 40 years through the process of embryo splitting, in
which a single early-stage two-cell embryo is manually divided into two individual cells and then
grows as two identical embryos. Reproductive cloning techniques underwent significant change
in the 1990s, following the birth of Dolly, who was generated through the process of SCNT. This
process entails the removal of the entire nucleus from a somatic (body) cell of an organism,
followed by insertion of the nucleus into an egg cell that has had its own nucleus removed
(enucleation). Once the somatic nucleus is inside the egg, the egg is stimulated with a mild
electrical current and begins dividing. Thus, a cloned embryo, essentially an embryo of an
identical twin of the original organism, is created. The SCNT process has undergone significant
refinement since the 1990s, and procedures have been developed to prevent damage to eggs
during nuclear extraction and somatic cell nuclear insertion. For example, the use of polarized
light to visualize an egg cell’s nucleus facilitates the extraction of the nucleus from the egg,
resulting in a healthy, viable egg and thereby increasing the success rate of SCNT.

Reproductive cloning using SCNT is considered very harmful since the fetuses of embryos
cloned through SCNT rarely survive gestation and usually are born with birth defects. Wilmut’s
team of scientists needed 277 tries to create Dolly. Likewise, attempts to produce a macaque
monkey clone in 2007 involved 100 cloned embryos, implanted into 50 female macaque
monkeys, none of which gave rise to a viable pregnancy. In January 2008, scientists at
Stemagen, a stem cell research and development company in California, announced that they had
cloned five human embryos by means of SCNT and that the embryos had matured to the stage at
which they could have been implanted in a womb. However, the scientists destroyed the embryos
after five days, in the interest of performing molecular analyses on them.
Therapeutic cloning
Therapeutic cloning is intended to use cloned embryos for the purpose of extracting stem cells
from them, without ever implanting the embryos in a womb. Therapeutic cloning enables the
cultivation of stem cells that are genetically identical to a patient. The stem cells could be
stimulated to differentiate into any of the more than 200 cell types in the human body. The
differentiated cells then could be transplanted into the patient to replace diseased or damaged
cells without the risk of rejection by the immune system. These cells could be used to treat a
variety of conditions, including Alzheimer disease, Parkinson disease, diabetes mellitus, stroke,
and spinal cord injury. In addition, stem cells could be used for in vitro (laboratory) studies of
normal and abnormal embryo development or for testing drugs to see if they are toxic or cause
birth defects.

Although stem cells have been derived from the cloned embryos of animals such as mice, the
generation of stem cells from cloned primate embryos has proved exceptionally difficult. For
example, in 2007 stem cells successfully derived from cloned macaque embryos were able to
differentiate into mature heart cells and brain neurons. However, the experiment started with 304
egg cells and resulted in the development of only two lines of stem cells, one of which had an
abnormal Y chromosome. Likewise, the production of stem cells from human embryos has been
fraught with the challenge of maintaining embryo viability. In 2001 scientists at Advanced Cell
Technology, a research company in Massachusetts, successfully transferred DNA from human
cumulus cells, which are cells that cling to and nourish human eggs, into eight enucleated eggs.
Of these eight eggs, three developed into early-stage embryos (containing four to six cells);
however, the embryos survived only long enough to divide once or twice. In 2004 South Korean
researcher Hwang Woo Suk claimed to have cloned human embryos using SCNT and to have
extracted stem cells from the embryos. However, this later proved to be a fraud; Hwang had
fabricated evidence and had actually carried out the process of parthenogenesis, in which an
unfertilized egg begins to divide with only half a genome. The following year a team of
researchers from the University of Newcastle upon Tyne was able to grow a cloned human
embryo to the 100-cell blastocyst stage using DNA from embryonic stem cells, though they did
not generate a line of stem cells from the blastocyst. Scientists have since successfully derived
embryonic stem cells from SCNT human embryos.

Progress in research on therapeutic cloning in humans has been slow relative to the advances
made in reproductive cloning in animals. This is primarily because of the technical challenges
and ethical controversy arising from the procuring of human eggs solely for research purposes.
In addition, the development of induced pluripotent stem cells, which are derived from somatic
cells that have been reprogrammed to an embryonic state through the introduction of specific
genetic factors into the cell nuclei, has challenged the use of cloning methods and of human
eggs.
ETHICAL, LEGAL AND SOCIO-ECONONOMICAL ISSUES OF GENE THERAPY
Because gene therapy involves making changes to the body’s basic building blocks (DNA), it
raises many unique ethical concerns. The ethical questions surrounding gene therapy and
genome editing include:

 How can “good” and “bad” uses of these technologies be distinguished?

 Who decides which traits are normal and which constitute a disability or disorder?
 Will the high costs of gene therapy make it available only to the wealthy?
 Could the widespread use of gene therapy make society less accepting of people who are
different?
 Should people be allowed to use gene therapy to enhance basic human traits such as
height, intelligence, or athletic ability?

Current research on gene therapy treatment has focused on targeting body (somatic) cells such as
bone marrow or blood cells. This type of genetic alteration cannot be passed to a person’s
children. Gene therapy could be targeted to egg and sperm cells (germ cells), however, which
would allow the genetic changes to be passed to future generations. This approach is known as
germ line gene therapy.

The idea of these germ line alterations is controversial. While it could spare future generations in
a family from having a particular genetic disorder, it might affect the development of a fetus in
unexpected ways or have long-term side effects that are not yet known. Because people who
would be affected by germ line gene therapy are not yet born, they can’t choose whether to have
the treatment. Because of these ethical concerns, the U.S. Government does not allow federal
funds to be used for research on germ line gene therapy in people.
Gene therapy in human beings raises a variety of important ethical, legal and social issues.
Somatic gene therapy (SGT) is similar to other forms of medical treatment in that the goal is to
treat or prevent diseases in individuals. SGT raises questions concerning safety and efficacy of
treatments and protection for human research subjects. Germ line gene therapy is different from
traditional medicine because it involves manipulation of the human genome to prevent the birth
of children with genetic diseases. Germ line gene therapy has been much more controversial than
SGT, because it creates risks not only to patients but also to future generations, and because it
may lead to genetic enhancement. Genetic enhancement raises a number of difficult issues,
including the ethics of changing human traits, parental control over children's lives, exacerbation
of discrimination and social inequalities and eugenics.
Key Concepts:

 Advances in genetics and biotechnology in the 1970s and 1980s made possible the first
somatic gene therapy experiments, which took place in the 1990s.
  Somatic gene therapy has had some successes but still faces significant technical
challenges.
 Somatic gene therapy can pose significant risks to patients and some have died in somatic
gene therapy experiments.
 Germline gene therapy has been more controversial than somatic gene therapy because it
involves deliberate, inheritable changes in the genome.
 Germline gene therapy poses risks not only to patients but also to future generations.
 Germline gene therapy raises difficult ethical questions related to tampering with human
nature, enhancing human traits, parental control over children, discrimination, social
justice and eugenics.
 The distinction between therapy (which aims to prevent or treat disease) and
enhancement (which aims to improve human traits), plays a key role in debates about
gene therapy.
 The therapy/enhancement distinction is not as clear as some have assumed, because the
concept of disease is not purely objective and includes social, cultural and ethical
dimensions.
 Investigators and institutions should take appropriate steps to protect the rights and
welfare of gene therapy patients participating in clinical research.
 In thinking about the balance of benefit and risks of a gene therapy study, it is important
to consider the safety and efficacy of the proposed research and the availability of
alternatives.
ETHICAL ISSUES OF GMOs AND GM CROPS
Genetically Modified Organisms (GMO) are organisms whose DNA has been modified in the
laboratory through genetic engineering. The organisms are selectively bred for generations to
obtain the organism with desired traits.
Most genetically modified organisms are used as ‘models’ in laboratory research to study the
function of specific genes. However, there are a lot of ethical issues related to genetically
modified organisms. Let us have a look at a few of them.

Ethical Issues Related to Genetically Modified Organisms

Following are the major ethical issues related to genetically modified organisms:

1. The genetically modified organisms introduced into the ecosystem could have
unpredictable results.
2. Claiming the patent rights is another problem that has cropped up for the genetically
modified organisms which are created for meeting food and medicinal requirements.
 3. 27 varieties of Basmati are cultivated in India. This variety is known for its unique
flavour and long grains. An American company cross-bred their semi-dwarf varieties
with the Indian Basmati and claimed it to be a ‘new’ variety. The company even got the
patent rights for the new variety without giving any compensation to the respective
country or the farmers. This is known as biopiracy. This would severely affect the
biodiversity of the concerned areas and harm the indigenous livelihoods.

4. The developing and underdeveloped parts of the world such as India, Africa, etc. have
traditional knowledge of their bio-resources. On the contrary, industrially developed
nations have poor biodiversity. Hence, laws should be made by developing nations to
prevent the exploitation of their resources.

5. An initiative was taken by the government in this aspect by setting up the GEAC
(Genetic Engineering Approval Committee) under the Environment Protection Act, 1986.
This body makes laws and rules for the creation, use, import and export and storage of
genetically modified organisms.
Ethical issues related to Genetically Modified Crops
The Nuffield Council on Bioethics (NCOB) has published two reports (1999 and 2004) on the
social and ethical issues involved in the use of genetically modified crops. This presentation
summarizes their core ethical arguments. Five sets of ethical concerns have been raised about
GM crops: potential harm to human health; potential damage to the environment; negative
impact on traditional farming practice; excessive corporate dominance; and the 'unnaturalness' of
the technology.
The illegal cultivation of Herbicide Tolerant (HT) Bt cotton has seen a huge jump as the sale of
illegal seed packets has more than doubled from 30 lakh in 2020 to 75 lakh in 2021.
Key Points
Bt Cotton:

 Bt cotton is the only transgenic crop that has been approved by the Centre for commercial
cultivation in India.
 It has been genetically modified (GM) to produce an insecticide to combat the cotton
bollworm, a common pest.
Herbicide Tolerant Bt (HTBt) Cotton:

 The HTBt cotton variant adds another layer of modification, making the plant resistant to
the herbicide glyphosate, but has not been approved by regulators.
  Fears include glyphosate having a carcinogenic effect, as well as the unchecked spread of
herbicide resistance to nearby plants through pollination, creating a variety of
superweeds.
Need for Using HTBt Cotton:
Saves Cost: There is a shortage of the labour needed to do at least two rounds of weeding for
Bt cotton.

 With HTBt, simply one round of glyphosate spraying is needed with no weeding. It
saves Rs. 7,000 to Rs. 8,000 per acre for farmers.
Support of Scientists: Scientists are also in favour of this crop, and even the World Health
Organization (WHO) has said it does not cause cancer.

 But the government has still withheld approval for HTBt.

Issues Emanating from Illegal Sale of HTBt Cotton:

 As it is not approved by the Genetic Engineering Appraisal Committee (GEAC), illegal

sale takes place in Indian markets.
 Farmers are at risk with such illegal cotton seed sale as there is no accountability of the
quality of seed, it pollutes the environment, the industry is losing legitimate seed sale and
the government also loses revenue in terms of tax collection.
 It will not only decimate small cotton seed companies but also threatens the entire legal
cotton seed market in India.
BIOTECHNOLOGY & BIOPIRACY
Biopiracy is the practice of commercial exploitation of biochemicals or genetic materials which
occur naturally. Typically, indigenous people have traditional cognition primarily consisting of
biological features and genetic diversity of the natural environment from one generation to
another. Few of the traditional knowledge relevant to global survival has the elements listed
below:
 Farming or Agriculture.
 Medicinal Plants.
 Varieties of Food crops.
The essential components for the survival of rural and indigenous people include conservation of
habitat, species, and biodiversity.

Examples of Biopiracy
1. Biopiracy of African super-sweet berries: A plant, Pentadiplandra brazzein found in
the west of South Africa. It is a vital source of a protein referred to as Brazzein. People
 there utilize it as a low-calorie sweetener. It is cognized to be much sweeter than sugar
(approximately two thousand times). Recent developments involve isolation of the gene
encoding brazzein that has been sequenced and patented in the USA.

2. Patenting of Azadirachta indica – Neem: Since ancient times, Neem has proved to be
useful in several ways. Indians have shared their knowledge regarding neem across the
globe. In the year 1994, U.S. Department of Agriculture and an American company –
W.R. Grace received a European patent that included various methods that are used for
controlling fungal infections in plants by using a composition extracted from neem.

3. Biopiracy of the Enola bean: It was named after the wife of Larry Proctor, who patented
it in 1999. Enola bean is a variation of Mexican yellow bean. The sales of this bean were
commercialised in North Mexico. Subsequently, the patent-holder sued many importers
of the Mexican yellow beans. Thereby, farmers faced an economic crisis. A lawsuit was
filed by farmers and the result was in favour of farmers as ruled by U.S. Patent and
Trademark Office.

4. The rosy periwinkle: The rosy periwinkle was originally found in Madagascar. Now, it
has been introduced to several other tropical countries across the globe. This implements
that researchers can obtain knowledge from one nation and plant samples in other
nations.

ELSI OF HUMAN GENOME PROJECT

The Human Genome Project (HGP) was completed in 2003. One of the key research areas was
ethical, legal, and social issues (ELSI). This page has more information about this research.

The U.S. Department of Energy (DOE) and National Institutes of Health (NIH) devoted 3% to
5% of their annual HGP budgets toward ELSI research surrounding availability of genetic
information. This represents the world's largest bioethics program. It has become a model for
ELSI programs around the world.

Human Genome Project ELSI

Rapid advances in the science of genetics and its applications have presented new and complex
ethical and policy issues for individuals and society. ELSI programs that identify and address
these implications were an integral part of the U.S. HGP since its inception. These programs
resulted in a body of work that promotes education and helps guide the conduct of genetic
research and the development of related medical and public policies.
A continuing challenge is to safeguard the privacy of individuals and groups who contribute
DNA samples for large-scale sequence-variation studies. Other concerns have been to anticipate
how the resulting data may affect concepts of race and ethnicity; identify potential uses (or
misuses) of genetic data in workplaces, schools, and courts; identify commercial uses; and
foresee impacts of genetic advances on the concepts of humanity and personal responsibility.

ELSI Research Goals

1. Examine issues surrounding the completion of the human DNA sequence and the study
of human genetic variation.
2. Examine issues raised by the integration of genetic technologies and information into
healthcare and public health activities.
3. Examine issues raised by the integration of knowledge about genomics and gene-
environment interactions in non-clinical settings.
4. Explore how new genetic knowledge may interact with a variety of philosophical,
theological, and ethical perspectives.
5. Explore how racial, ethnic, and socioeconomic factors affect the use, understanding, and
interpretation of genetic information; the use of genetic services; and the development of
policy