POPH20001 - Visible and invisible differences

impact of society and media on perception of appearance (2)

People's satisfaction with their appearance = often based on comparisons with others

• Eg. Angela Jolie coming out about having risk-reducing surgery for BRCA1 → uptake in appointments related to risk-reducing surgery and general info about cancer

Media often presents a person's worth based on their appearance and sexual attractiveness -> may also create assumptions about intelligence, stereotypes etc

• Eg. sleeping beauty ->  villain is older and disfigured

neurofibromatosis - visible difference

term for three distinct genetic disorders -> can cause visible deformities

neurofibromatosis - research study

No significant difference was found on measures of body esteem, happiness, stigma or social comfort between those young  people who reported their NF1 was noticeable to others and those who reported it was not

Parent survey indicated greater perceived noticeability did relate to greater perceived stigma and lower levels of social interactions

visible differences - factors shaping development of self concept (4)

• Social difficulties

• Life stage/ transition times

• Internalising/ externalising issues

• Treatment needs

visible differences - factors influencing coping (6)

• Age related -> eg. maturing over time

• Society's role

• Shaming

• Differential treatment

• Teasing and bullying

• Family/ parental attitudes

visible differences - main buffer used to adjust to their condition

resilience

types of resilience (3)

Behavioural -> that which people can control → eg. going to physio to improve core strength so walking is gait is more stable

Emotional -> reframing set backs as opportunities for growth and being flexible in emotional reactions to stress

Cognitive -> ability to overcome negative effects or stress on cognitive functioning

visible differences - cognitive processes affecting adjustment other than resilience (6)

• Self esteem

• Level of investment in appearance

• Comparisons with others

• Opinion

• Coping style -> adaptive and maladaptive styles

• Social interaction skills

invisible differences - factors influencing (4)

• Views of others -> eg. "but you don't look sick?"

• Culture -> eg. cancer = taboo topic

• Stigma -> eg. shame of having a sick child or an individual not suitable for marriage

• Waiting for a condition to develop

invisible differences - unique challenges of waiting for a condition to develop (3)

• If or when to disclose the condition -> when dating, with family or friends, at work

• Waiting for symptoms to develop

• Feeling invisible or marginalised

how invisible differences become visible - list (3)

1. deliberate → to avoid misconceptions about cause of symptoms, access support or create awareness

2. secondary outcomes → unavoidable outcomes of surgery/ treatment

3. disease progression → development of visible symptoms

respectful communication considerations - list (6)

1. Consider the person as an individual

2. Avoid assumptions -> eg. intelligence, stereotypes, health and self-image

3. Consider impact of verbal and non-verbal communication

4. Consider relevance of questions -> eg. is question out of curiosity or to provide good care

5. Be aware of own biases -> society can often have an ableist lens

6. Avoid ableist language

respectful communication considerations - health care specific list (6)

1. Be empathic

2. Avoid making judgements

3. Offer to link with peers/ support groups

4. Provide information without using jargon

5. Foster appropriate hope and empowerment

6. Flexible and collaborative approach to health care

role of genetic counsellor

provide accurate information in layman's terms, identify need for supports, explore impacts of results -> implications of positive genetic test results and positive genetic results but negative phenotype

dysmorphology - def

physical features not usually found in other individuals of same age or ethnic background

Clinical geneticist may explore possibility that either a specific or combination of visible and/ or invisible features may be due to an inherited syndrome

ethics of using genetic material in art - considerations (3)

• Consent and ethical treatment of living organisms

• Manipulation of living organisms

• Ownership and commodification -> ownership rights and representation of genetic data

genetics in art and media - education and scientific collaborations

Interdisciplinary curricula -> partnerships between artists, educations and science promotes integration of genomics art with STEM learning

Public science programs can use genomics-inspired art to promote scientific literacy and community engagement

benefits of art as a platform for public dialogue on genetics (3)

Genomics-inspired art makes complex genetic science accessible to the public -> encourages broad engagement and understanding

Stimulates ethical reflection on identity, determinism and biotechnology's future through accessible visual narratives

Visual and interactive artworks democratize scientific knowledge beyond academic circles -> fosters inclusive dialogue