MHA 551: Chapter 9

Chapter 9 Notes

Human Genome Project

an effort that succeeded in mapping out the human DNA sequence

deoxyribonucleic acid (DNA)

the small code contained in all human cells that determines each person’s characteristics

genetic testing

tests that can determine specific traits in humans

primarily used to screen for certain diseases which can provide patients with awareness and understanding

in healthcare, genetic testing offers a variety of test to determine the possibility of developing certain disorders and diseases

Provide examples of how genetic testing is utilized

legal systems uses genetic testing to match samples from crime scenes to criminal suspects

courts use genetic testing to establish paternity to ensure that financial support is provided to mothers and their children

in healthcare, genetic testing helps determine the possibility of developing certain disorders and diseases

BRCA

an acronym for BReast CAncer susceptibility gene

normally works to prevent the development of cancer cells

those with BRCA mutations are not able to suppress the development of tumors (which can lead to breast or ovarian cancer)

Genetic Information Nondiscrimination Act

under Title II of this act employers cannot use genetic information to discriminate against employees or applicants applying for jobs

employers are prohibited from collecting genetic information or testing for certain genetic traits

healthcare organizations are prohibited from sharing genetic information to any third party without patient consent

What does genetic information include?

the results of an individual’s genetic testing (as well as results of family members)

family history of genetic diseases

eugenics

a controversial science that advocates the use of practices geared toward improving the genetic composition of a population

used by Nazi Germany to justify medical experimentation and even extermination of non-white and Jewish citizens

used in America to pass laws requiring the sterilization of certain nonconsenting patients classified as “mentally ill” in an effort to reduce the risk of continuing the genetic line

sterilization

a procedure that disables a human from reproducing

cloning

the scientific copying of cells to create copies with similar genetic content

generally considered acceptable for research purposes only and will not be soon be used for any other purposes

United Network for Organ Sharing (UNOS)

an agency that operates and oversees the OPTN

a private, nonprofit organization that contracts with the federal government

focuses on sharing organs from deceased donors in an efficient and equitable manner

maintain a waiting list of potential organ recipients and work on educational efforts to increase organ donations nationwide

raises awareness of live donations in response to the shortage of organs available for transplantation

live donations

living donors give organs to those in need of a transplant

In the United States, the primary avenue for promoting organ donation has been through ________, ________, ________

marketing

education

certain state laws requiring citizens to designate their organ donation status on driver’s licenses

List factors that determine a match in organ donation

compatibility

location

age

size

health condition of both donor and recipient

medical marijuana

recommended for therapeutic use by some medical professionals as studies have found it effectively reduces pain, controls nausea, and vomiting and is less addictive than other controlled substances

controlled substance

heavily regulated and illegal to take across state lines

opioids

highly addictive controlled substances

Public Health Emergency Act

an act that authorizes the Secretary of the Department of Health and Human Services to shift funding so that it may be utilized more easily in order to address public health emergencies

List the five major priorities the U.S. Department of Health and Human Services is focussing its efforts on in response to the opioid crisis

improving access to treatment and recovery services

promoting use of overdose-reversing drugs

strengthening our understanding of the epidemic through better public health surveillance

providing support for cutting-edge research on pain and addiction

advancing better practices for pain management

Through its partnerships with pharmaceutical companies and academic research centers, what does NIH hope to develop?

safe, effective, non-addictive strategies to manage chronic pain

new, innovative medication and technologies to treat opioid use disorders

improved overdose prevention and reversal interventions to save lives and support recovery

In 2003, the ________ ________ ________ succeeded in mapping out the human DNA sequence

Human Genome Project

The United Network for Organ Sharing maintains ________ ________ and matches donated ________ to potential transplant recipients

a waiting list of potential organ recipients

organs

According to the ________ ________ ________, patients have the right to decide whether or not to participate in ________ ________

Patient Bill of Rights

research studies

True/False: Nazi Germany used the philosophy of eugenics to justify medical experiments and extermination of citizens

True; primarily non-white and Jewish citizens

True/False: Organs are given out on a first-come, first-served basis

False

True/False: The conscience clause can be used at any time in a healthcare professional’s career

False, legally healthcare professionals must tell employers that they wish to utilize the conscience clause at the time of hire

What do you think is the most fair and equitable method for allocating organs?

Given the shortage in viable organs, we have to ensure that we level the playing field and establish inclusive criteria that actually guarantees that everyone has an equal opportunity to receive the organs they need.

Would you consider genetic testing for yourself or your family?

I would consider genetic testing for myself just so that I’m aware of any diseases and/or disorders that I may be at an increased risk of developing

If a patient is considering participating in a research study, what advice can you giver him or her?

If a patient is considering participating in a research study, I wouldn’t give them any advice per se unless they explicitly asked me for my opinion. However, I would ensure that they were aware of all options (including the clinical study and palliative care) and let them what they think is best