Genomics research is the study of our genome, which consists of a full set of our stored
genetic material. Most humans share about 99.9% of their DNA, so what is being researched is
that 1%. Sometimes even less, depending on if we are having our full set of DNA tested (Family
History Fanatics.) The study of genetic material has become increasingly popular in the last few
years, over 26 million people have taken an at-home ancestry test. If the current trend continues,
the gene cellars could hold information on the genetic profile of far more than 100 million
citizens within the following 24 months. What makes these ancestry tests appealing is that
companies can obtain DNA from your cells using just a cheek swab. They run it through a chip
that decodes approximately 600,000 positions where people’s DNA code differs (Regalado). For
only $30-59, you can discover heritage clues and have a chance of uncovering hidden family
secrets, such as relatives you didn’t know about. Finally, your DNA can disclose details about
your physical attributes, such as how your hands are shaped and whether you dislike the taste of
blueberries or are inclined to certain diseases. AncestryDNA, 23andMe, HomeDNA, Living
DNA, and MyHeritage DNA offer more than a dozen such trait reports (Regalado.) However, the
information we provide to these companies may not always be secure, putting us at risk of, for
example, genomic discrimination.

The aim of genomics research is to directly benefit some participants in genomics
research and to make new discoveries in the understanding of these diseases. Planning to
potentially help future patients, and to assist researchers and industrial enterprises in creating
new disease medications treatments and diagnostic exams. The purpose of scientific research is
to advance medicine and the healthcare field so we as a population can live longer and healthier
lives.

So, how does genomic research take place? Consent is a fundamental principle of ethical
guidelines. The contributions of research participants help genomic testing become able to
advance scientific research. Informed consent can help to keep participants safe from the risks of
genomic research. Its goal is for human participants to join research voluntarily and with a clear
awareness of what it entails for them to partake, and for them to give informed consent before
joining the research (“Informed Consent”). Although there are numerous advantages to genomic
testing, it is crucial to be aware of the risks and carefully evaluate the process of giving consent
to genomic testing. Informed consent is not always required by federal regulations (“Informed
Consent”). Participants are a fundamental component of the scientific society, however, the
information they share for advancements may not always be protected. Researchers should
ponder what relevant information participants might need to understand the risks and potential
benefits of taking part in the study. The process of informed consent demonstrates that those who
contribute samples and health-related details to these developments are treated with the utmost
respect throughout the process of research.

When participating in genomics research, we must ask ourselves how is our information
being managed. If it is safe? And how is our genetic information stored, and what are the risks?
It is up to the participant to weigh the risks and benefits of participating, but it is the researchers’
ethical responsibility to inform all participants of what engaging in genomics research entails.
Our genetic material has the potential to either save or harm us. A rape victim recently filed a
lawsuit against the city of San Francisco, California, after San Francisco police used DNA from
her case of sexual assault to incarcerate her for an unrelated property crime (“A Woman Whose
Rape DNA Led to Her Arrest Sues the City of San Francisco”). Fortunately, the woman, in this
case, successfully used her genomic protections to fight back. Acts requiring informed consent
address the issue of exploited genetic information. However, Informed consent is not always
required by federal regulations (Informed Consent | Guidance Portal). Although the San
Francisco woman was able to win her rights, but they were still violated. She claimed that because
her DNA was accumulated while she was the victim of a crime, using it to arrest her for an
unrelated crime was an example of unlawful seizures and searches and therefore infringed her
civil rights. Because her DNA was collected while she was a victim of assault, the woman
claimed that using her genetic data to arrest her for an unrelated crime was an example of an
illegal search, violating her civil rights. This woman was a rape victim, and a person who has had
her physical autonomy violated does not need any additional reasons to refrain from seeking
medical care or trying to report the crime. As stated in the article “Ogren: DNA privacy is a civil
rights issue” Allison Ogren questioned, “How can we keep hearing about patients’ private
medical information being shared with the government without their full understanding and
consent, including rape victims?”

The “Genetic Information Non-Discrimination Act of 2003” is one of the many acts that
protect the rights of genomics research participants. When participants disclose their genetic
information, an unfortunate risk they are likely to face is genomic discrimination. Genomic
discrimination is defined as when an employee or insurance company starts treating individuals
differently because they have a gene mutation that causes or increases the likelihood of an
inherited disorder (What Is Genetic Discrimination?: MedlinePlus Genetics). Misuses of genomic
information can cause people to lose their jobs and be judged over things they do not have
control over. If a person finds themselves in this predicament, being informed of their consensual
genomic rights will help them avoid further discrimination. According to the “Genetic
Information Non-Discrimination Act of 2003,” it is illegal for employers, job agencies, and
training courses to hire or fire anyone based on genetic information. Unless the employee gives
written consent, an employer cannot request, necessitate, or buy genetic information (“Summary
of Genetic Information Non-Discrimination Act of 2003 (S. 1053)”). Informed consent raises the
participants’ knowledge and understanding of such regulations, reducing life-altering risks such as
loss of employment.

Although it is crucial for the participant to do their research on genomic testing. The
researcher initiates the process of informed consent. Researchers and research participants should
engage in a discussion about the specific considerations associated with contributing genomic
data (“Summary of Genetic Information Non-Discrimination Act of 2003 (S. 1053)”). Informed
consent is not always required by federal regulations, however, I believe that informed consent
should be required for all research involving genomic data. The requirement of informed consent
protects citizens from discriminatory practices and violations of their personal autonomy. When
sharing genetic information, the researcher must prioritize open communication of all of the
variables that the participant may encounter.

This consists of the potential risks and benefits of genomic research. As mentioned before
a risk of participating in genomic research is experiencing genomic discrimination, other risks
include the emotional, social, or financial consequences of the test results. Many of the risks
associated with genetic testing involve the sentimental, sociocultural, or financial repercussions
of the medical reports. Individuals may even be upset, depressed, agitated, or remorseful about
their outcome measures (What Are the Risks and Limitations of Genetic Testing?: MedlinePlus
Genetics.) In some instances, genetic screening creates tension inside a household since the
results can disclose details about the other members of the family in relation to the person who is
tested (Informed Consent | Guidance Portal) ). Because of the risks associated with genomic
research, the general public may be hesitant to participate without fully grasping the concept of
informed consent. As a result, I believe that informed consent must be obligated in all case
scenarios when genetic material is withdrawn. The risks of genomic testing can be
counterbalanced with proper attention and understanding. Although the risks of genetic testing
may appear intimidating, which is entirely plausible, the benefits substantially outweigh the
risks.

The benefits of genomic research include, genomic medicine has the potential to make
genetic disease diagnosis, a more effective and cost-effective process by limiting DNA testing to
a single step. Genomics research aids in advising participants about prospective medical issues
throughout their lives. In the article, The impact of genomics on the future of medicine and
health | The Medical Journal of Australia, by John S Mattick, Marie A Dziadek, Bronwyn N
Terrill, Warren Kaplan, Allan D Spigelman, Frank G Bowling, and Marcel E Dinger, conclude
the continual advantage of genomics research. The article explains the implementation of
genomic data to technical advances, health research, and medical services will also have a
substantial impact on the country’s economy, including both in terms of lowering disease treatment expenses and presenting new knowledge. Restorative development, healthcare distribution, and population health can all profit from genomic analysis. The general public must
recognize that we can make a contribution to the tremendous potential of customized and
individual genomic medicine. Overall, genomics research is an incredible advancement that our
generation and century are extremely fortunate to witness. However, as with anything else,
precautions must be taken to ensure that such a significant advancement is carried out safely.
Informed consent enables this, making it the most important aspect of genomics research. It
serves as a link between research and the general public. It is what keeps incidents like the San
Francisco police violating personal data from occurring.

To limit the instances of genomic data being unlawfully misused, we must prioritize and
require informed consent on a federal level. It serves as a protection and agreement between
scientific progress and the current population. Participants in genomics research directly benefit
from new discoveries when they can clearly understand what comes with partaking in research.
Planning to potentially assist future patients and researchers and industrial enterprises in the
development of new disease medications, treatments, and diagnostic exams. The goal of
scientific research is to advance medicine and healthcare so that we can all live longer and
healthier lives. Despite the possibility of genomic discrimination and data misuse, continuing to
pass bills such as the “Genetic Information Non-Discrimination Act” will make participants keep
safe and respected. Informed consent enables research advancements and has the potential to
transform the future of global health. Informed consent is based on being honest and transparent
with individuals as well as providing a safe space in healthcare systems.