13.11 Human genetic research
generates knowledge with the potential to improve individual and community health
. … Research can also reveal information about an individual’s susceptibility to disease and hence about the individual’s future health.
Who should access genetic information?
A clinical geneticist believes that if anyone is to own genetic information, it has to be
all those who have inherited it
and, more importantly, it must be available to all those who might be at risk.
Why genetic information should be public?
In general there is a high level of public support for some uses of genetic information, for example: to
improve the diagnosis of diseases
and to better understand who is at higher risk of common diseases, to develop treatments for genetic disorders, and to identify or eliminate possible offenders from police enquiries …
Is genetic privacy important?
When the access of genetic information is regulated,
it can prevent insurance companies and employers from reaching such data
. This could avoid issues of discrimination, which oftentimes leaves an individual whose information has been breached without a job or without insurance.
Why should genetic testing be mandatory?
It provides information that can be useful for advancing treatments, creating management plans, and guiding family planning. Genetic testing should be mandated because
of its ability to promote individual health in adults and children
, and the major impact that it has on aiding in the push to create a healthier public.
What are the pros and cons of finding out your genetic makeup?
- Treatment of Disease. …
- Lifestyle Changes for Disease Prevention. …
- Stress Release from Lack of Genetic Variants. …
- A Negative Test Could Mask Additional Causes. …
- A Positive Test Could Unnecessarily Increase Stress. …
- Genetic Purgatory. …
- Cost. …
- Privacy Concerns.
Do we own our own genetic information?
Any Genetic Information (your DNA data and any information derived from it) belongs to
the person who provided the DNA sample
, subject only to the rights granted to AncestryDNA in this Agreement.”
What are the risks involved in releasing genetic information?
Many of the risks associated with genetic testing involve the
emotional, social, or financial consequences of the test results
. People may feel angry, depressed, anxious, or guilty about their results.
What are the ethical issues of genetic screening?
In a large number of instances, when patients receive the results of genetic tests, they are party to
information that directly concerns their biologic relatives as well
. This familial quality of genetic information raises ethical quandaries for physicians, particularly related to their duty of confidentiality.
Should employers have access to genetic information?
Employers should not use genetic information
to discriminate against, limit, segregate, or classify employees in a way that would deprive them of employment opportunities. Employers should not obtain or disclose genetic information about employees or potential employees under most circumstances.
Can genetic code be confidential?
As a legal matter,
confidentiality is generally protected in the doctor-patient relationship
. However, genetic testing may not always occur within a doctor-patient relationship: a non-M.D. scientist may undertake the testing, or screening may occur in the employment setting.
How is genetic information used?
Genetic information or genetic test results can be
used to prevent the onset of diseases
, or to assure early detection and treatment, or to make reproductive decisions. This information can also be used for nonmedical purposes, such as insurance and employment purposes.
Does the government have the right to use genetic data on the Web?
No federal law prohibits
surreptitious testing. Currently, many U.S. states have laws or regulations that govern genomic privacy and illegitimate uses of genomic data. However, these laws vary substantially.
Why is it important to safeguard patients genetic information from employers and insurance underwriters?
Regarding health insurance protections,
GINA prohibits most health insurance policies from using an individual’s genetic information
for underwriting purposes. Under GINA, a person’s current health insurance policy cannot be terminated due to genetic information, nor can their premiums be raised.
How can we protect our genetic information?
In particular, a federal law called
the Genetic Information Nondiscrimination Act (GINA)
is designed to protect people from this form of discrimination. GINA has two parts: Title I, which prohibits genetic discrimination in health insurance, and Title II, which prohibits genetic discrimination in employment.
Is genetic testing a good idea?
Genetic testing is useful in many areas of medicine and
can change the medical care you or your family member
receives. For example, genetic testing can provide a diagnosis for a genetic condition such as Fragile X or information about your risk to develop cancer. There are many different kinds of genetic tests.
Is genetic testing legal?
Prohibits federal employers
from requiring or requesting genetic tests as a condition of being hired or receiving benefits. Employers cannot request or require employees to undergo genetic tests in order to evaluate an employee’s ability to perform his or her job.
What are the advantages and disadvantages of DNA testing?
The main advantage is that
early detection may prevent more severe forms of a disease
or prevent a couple from having a sick child. The main disadvantage is that it may cause psychological stress to an individual if they were not previously aware of an increased risk of developing a disease that has no cure.
Does the FDA regulate genetic testing?
Federal Regulation
Several federal agencies regulate genetic tests: the Food and Drug Administration (FDA), the Centers for Medicare and Medicaid Services (CMS), and the Federal Trade Commission (FTC).
How are genetic tests regulated?
Genetic tests are regulated at the federal level through three mechanisms: 1)
the Clinical Laboratory Improvement Amendments
(CLIA); 2) the Federal Food, Drug, and Cosmetic Act; and 3) during investigational phases, regulations for the Protection of Human Subjects (45 CFR 46, 21 CFR 50, and 21 CFR 56).
What are the advantages and disadvantages of genetic engineering?
Genetic engineering
made it possible to create crop varieties regarded as “more beneficial”
. Unlike selective breeding, modern genetic engineering is more gene-specific. One of the downsides of selective breeding is the possibility of generating traits that are less desirable.
What is genetic data in GDPR?
Genetic data should be defined as
personal data relating to the inherited or acquired genetic characteristics of a natural person which result from the analysis of a biological sample from the natural person in
question, in particular chromosomal, deoxyribonucleic acid (DNA) or ribonucleic acid (RNA) analysis, or from …
Who owns and controls our personal genetic information?
Canadian law now prohibits any person from requiring an individual to undergo a genetic test or to disclose the existing results of genetic tests. Essentially, the Genetic Non-Discrimination Act puts
you
in control of your personal information.
Is Gene Patenting ethical?
Gene patenting is unethical to those who see the human genome as our common heritage. … Though gene patenting is
widely
accepted throughout the world, many countries limit the scope of gene patents as a way to minimize the negative impact on health care costs and on the free flow of information in research.
Do you think individuals should be allowed to have access to direct to consumer genetic testing?
Direct-to-consumer genetic testing promotes awareness of genetic
diseases
. It provides personalized information about your health, disease risk, and other traits. It may help you be more proactive about your health.
What are some of the moral concerns about using genetic testing to decide whether to end a pregnancy?
There are two good arguments that go against genetic screening. Some feel that
genetic screening would lead to discrimination of those individuals
, which possess “inferior” genes. Second, people fear that genetic screening will lead to reproductive decisions being based on the genetics of their child.
Can employers mandate the policy of genetic testing?
Genetic testing is allowed as long
as it is part of a voluntary wellness program and reasonably promotes health or prevents disease. At this time, employers cannot penalize employees who do not provide genetic test results.
How does the genetic information Nondiscrimination Act protect people?
GINA
prohibits the use of genetic information in making employment decisions
, such as hiring, firing, advancement, compensation, and other terms, conditions, and privileges of employment.
Should employers be allowed to screen potential employees using this genetic test?
The Inquiry therefore recommends that employers should
not
conduct genetic screening of employees for susceptibility to work-related conditions if the environmental risks can be eliminated or significantly reduced by reasonable measures.
Why is genetic screening controversial?
Real and conceivable controversies
If used in an ethical manner, genetic testing
can eliminate unforseen suffering and distress
. But, issues such as privacy, consent, discrimination, equity, and social engineering are potential barriers that many individuals have confronted already.
What are some of the ethical issues that can arise from genetic testing and genetic counseling?
- Identifying Pregnant Patients. Identifying and testing pregnant patients is one of the more common ethical issues in genetics counseling. …
- Lack of Treatments. …
- False Results. …
- Inappropriate Testing. …
- Forensic Issues.
Is genetic information protected under Hipaa?
Yes,
genetic information is health information protected by the Privacy Rule
. Like other health information, to be protected it must meet the definition of protected health information: it must be individually identifiable and maintained by a covered health care provider, health plan, or health care clearinghouse.
Why you shouldn’t get a DNA test?
For less than $100, folks can discover their ancestry and uncover potentially dangerous genetic mutations. About 12 million Americans have bought these kits in recent years. But DNA testing isn’t risk-free — far from it. The kits jeopardize people’s privacy, physical health, and
financial well-
being.
How should families employers and medical professionals act on genetic information?
Under GINA and the Health Insurance Portability and Accountability Act (HIPAA), all medical information collected by an employer, including genetic information,
must be kept in a confidential, separate medical record
.
Who should access genetic information?
A clinical geneticist believes that if anyone is to own genetic information, it has to be
all those who have inherited it
and, more importantly, it must be available to all those who might be at risk.
Should your genetic information be public?
insurance Portability and Accountability Act (HIPAA) doesn’
t include genetic information
. The federal laws that deal with genetic information are GINA (the Genetic Information Nondiscrimination Act of 2008) and, more recently, HIPAA. GINA is essentially an anti-discrimination law that has nothing to do with privacy.
Why genetic information should be public?
In general there is a high level of public support for some uses of genetic information, for example: to
improve the diagnosis of diseases
and to better understand who is at higher risk of common diseases, to develop treatments for genetic disorders, and to identify or eliminate possible offenders from police enquiries …
What are some factors that influence access and use of genetic information?
Other factors include
the availability of quality genetic resources in the community
, the appropriateness of genetic technologies offered to the community, the accessibility of clinical and genetic services, the costs and benefits of using genetic technology, and the community’s knowledge of the use of genetics to …
What are the pros and cons of finding out your genetic makeup?
- Treatment of Disease. …
- Lifestyle Changes for Disease Prevention. …
- Stress Release from Lack of Genetic Variants. …
- A Negative Test Could Mask Additional Causes. …
- A Positive Test Could Unnecessarily Increase Stress. …
- Genetic Purgatory. …
- Cost. …
- Privacy Concerns.
