Week 5

What is Race?

Group affiliation based on similar physical characteristics.

AMA policy on race

Race is a social construct, not a biological construct defined by genetic traits. Scientifically, there is only one race of people = human.

What is Ethnicity?

Group of people sharing national origins along with:
language,

lifestyle

religion

food

and other characteristics (e.g., Hispanic identifying with Black or White racial groups).

What is Nationality?

Refers to the country of citizenship; a legal relationship between an individual and a state granting rights and obligations under state laws.

New census categories

By 2027/2030: Middle Eastern North African added.

What is Skin of Color (SOC)?

The skin characteristics of a diverse range of populations that self-identify as belonging to a racial/ethnic group other than non-Hispanic Whites.

Health Risks of Skin Bleaching & Hair Relaxers

Global use driven by desire to conform to European/lighter skin beauty standards; chemically altering products increase the risk of cancer and skin conditions.

Health & Social Effects of Darker Skin Tones (Research Findings)

High blood pressure

higher allostatic load

lower socioeconomic status

worse criminal justice outcomes/police stops

lower educational attainment

discrimination

lower wealth.

Nurse’s Role in Skin Tone Disparities

Increase knowledge about skin color impact on health disparities and variations in clinical presentations

educate clients on health risks of chemical skin/hair altering products

understand sociocultural implications of skin tones.

Skin Tone Disparities in Assessment & Diagnosis

Medical students are not adequately prepared for darker skin assessment. Misdiagnosis/delayed diagnosis occurs in many conditions.

darker skin assessment errors examples

Skin Cancer (higher morbidity/mortality)

Psoriasis (delayed due to lack of erythema)

Atopic Dermatitis

Eczema

Basal Cell Carcinoma

Sexual Assault (inability to detect trauma).

Eczema Presentation Variations by Skin Tone

Lighter skin tones: red, pink.

Darker skin tones: ashen gray, white, purple, darker brown.

What is Ancestry?

Ancestors are individuals from whom you are biologically descended; ancestry is information about them and your genetic relationship to them.

Genealogic Ancestry vs Genetic Ancestry

Genealogic Ancestry: Identifiable ancestors in your family tree/pedigree (tells you WHO your ancestors are).

Genetic Ancestry: Subset of paths through which your genome was inherited; leaves out half of ancestry (tells you WHICH ancestors you inherited DNA from).

Genetic Similarities (Population Ancestry)

Summaries of how your genome is similar to specific populations (e.g., specific continents) rather than specific relatives/cultures (used by 23andMe, Ancestry.com).

What is Epigenetics?

study of causes of changes in phenotypes or gene expressions not explained by the underlying DNA sequence.

Epigenomic Mechanisms

1. DNA Methylation (methyl group added at cytosine/CpG sites; up/down-regulates genes).

2. Histone Modifications (regulates transcription).

3. Chromatin Remodeling

4. Non-coding RNA (post-transcriptional gene regulation).

Factors That Impact Epigenetics & Methylation: Positive

Positive:

Exercise

normal BMI

healthy diet

quality sleep

green spaces

stress management.

Factors That Impact Epigenetics & Methylation: Negative

Negative:

Residential environment

alcohol abuse

smoking

environmental degradation

certain medications

viral infections

poverty

certain diseases

Definition of Omics

Large-scale analyses of biological molecules (DNA, RNA, proteins, metabolites) that collectively describe cellular and systemic functions.

Genomics

(structure/function of genomes)

Epigenomic

epigenetic modifications

Proteomics

(protein interactions/structure)

Transcriptomics

(whole transcriptome changes)

Metabolomics

(metabolites present)

spatial omics

measures what biological molecules are present inside a tissue sample

Microbiome

microorgs in or on us

Genetics

"Science of heredity"—study of individual genes and rare single-gene disorders.

Genomics: how does it differ from genetics?

it’s the study of all genes in the human genome together, including interactions with each other

Outcomes of the Human Genome Project & GWAS

Pharmacogenetics tailors drug prescribing based on genetics.

GINA Law

(Genetic Information Nondiscrimination Act of 2008) Prohibits genetic discrimination.

Title 1 of GINA

Health insurance cannot deny coverage or adjust rates based on genetic test results

Title 2 of GINA

Protects employees from genetic discrimination.

DOES NOT PROTECT:

Companies with <15 employees,

or life, disability, and long-term care insurance.

Privacy in genetics

Right of the individual to control their own body, actions, and personal information.

Confidentiality in Genetics

Nurse’s obligation to protect and not disclose personal information provided in confidence.

Risks of Genetic Testing

Psychological risks (parental guilt for carriers, lowered self-esteem for children diagnosed

Social risks

Financial risks,

Potential insurance/employment discrimination

Potential unauthorized use of stored samples in data banks.

Traditional/Newer Genetic Tests & Newborn Screening

Traditional: Newborn screening (tandem 24 disorders like PKU, Down Syndrome, Spina Bifida). Newer: Breast, ovarian, and other cancer genetic screenings.

Newborn Screening & Carrier Status Results

Incidentally obtained carrier status findings should be given ONLY to parents who have had previous counseling and given consent.

Genetic Testing in Children

Inappropriate if interventions in childhood do not reduce morbidity/mortality.

Eliminates the child's right to informed choice and risks lifelong stigma.

Nurses should not accommodate parent requests until the child has decision-making capacity.

Ethical Dilemma: Confidentiality vs. Duty to Warn Family Members

Nurses do NOT have legal authority to breach client confidentiality to disclose genetic information to family members (e.g., BRCA mutation). Guidance should be sought from the institution's Ethics Board per the ANA Code of Ethics.

Main Elements of Informed Consent

1. Information (complete details on purpose, risks, benefits, duration, right to withdraw).

2. Comprehension (ensuring information is understood).

3. Voluntariness (participation is voluntary of free will).

How to Check for Voluntariness and Comprehension

Comprehension is an ongoing process, not a document; ask participant to explain the study in their own words.

Check voluntariness by explicitly confirming participation is of free will without coercion.

3 types of consent

Traditional

Binary

Tiered

Traditional consent

Broad agreement to both research participation and public release of genetic data

Binary consent

Agrees to primary research project, but chooses NOT to share genetic data.

Tiered Consent

Agrees to primary study with multiple options/control over whether, how, and with whom genetic data is shared.

What is the School Nurse's Role When Multiple Students Lack Health Insurance?

Advocate for equitable access to healthcare resources

Identify community/federal health resources

Assist families with enrollment programs
Address social determinants of health within the school community.