Background Information

Genetics

Cells are the building blocks of all living organisms. They provide structure, carry out essential functions for life and contain DNA, the body’s hereditary material. Half of a person’s DNA comes from the mother, the other half comes from the father. It is made up of four chemical bases (A, T, C and G), which form base pairs in a double helix structure.

Genes are groups of DNA that provide the body with instructions on how to make essential protein molecules. Chromosomes are sets of tightly-wound DNA located mostly in a cell’s nucleus. Humans normally have 23 pairs of chromosomes, 22 of which are the same in both genders. The last pair is called the sex chromosome because females have two Xs and males have an X and a Y. In the lab, scientists often stain chromosomes with chemicals to reveal bands that indicate the location of genes.

Genetic mutations are permanent changes to the DNA sequence in a gene that can be inherited from the parents or develop during a person’s lifetime such as from environmental factors or when there is a mistake during DNA replication. Genetic conditions occur when one or more mutations prevents proteins from functioning properly, which can lead to developmental and health issues. Many genetic mutations do not cause health problems and genetic alterations can be responsible for eye color, hair color and blood type. This can make it difficult to precisely diagnose genetic conditions that adversely affect a person’s health.

There are many types of genetic mutations, including:

  • Missense: Change in one DNA base pair where an amino acid replaces another protein produced by a gene
  • Nonsense: Change in one DNA base pair where altered DNA prematurely signals to stop building a protein and can lead to function improperly or not at all
  • Insertion: Adds a base pair to a piece of DNA and protein may not function or function improperly
  • Deletion: Removes piece of DNA, can range from small number of DNA base pairs to whole genes
  • Duplication: Piece of DNA abnormally copied one or more times

There are now more than 7,000 rare diseases and genetic mutations are a factor for significant portion of them. Rare diseases affect about 1 in 10 Americans, or about 30 million people nationwide, and about 350 million people worldwide. About 80 percent of rare diseases are caused by genetic mutations. Researchers have made progress in understanding genes since the Human Genome Project completed the map of the human genome sequence in 2003, but there is still much to learn about genetics.

Bullying

The U.S. government site StopBullying.gov defines bullying as “unwanted, aggressive behavior among school aged children that involves a real or perceived power imbalance. The behavior is repeated, or has the potential to be repeated, over time.”

About 28 percent of students from age 12-18 years old said they were bullied in the 2011 school year. Forms of bullying include name-calling, purposefully leaving someone out of a group, spreading rumors, threats, destruction of personal property and physical attacks.

Educators, parents and adults can help by talking directly to kids about bullying and providing support to all those involved. It is important to know that bullying can negatively impact kids who are bullied and kids who bully.

Issues in Eastern Africa

Many people with albinism in Eastern Africa constantly live in fear of being mutilated or killed because area witch doctors will pay tens of thousands of dollars for the their body parts. This issue is most highly concentrated in Tanzania and overflows into Burundi, Malawi and even Jayne’s home country of Kenya.

The United Nations estimates about 74 people with albinism have been killed in Tanzania since 2000. Jayne said there is often an increase in attacks during elections because many politicians believe body parts from people with albinism have the power to bring good luck. In January 2015, the Tanzanian government banned witchdoctors and arrested more than 200 in attempt to stop the recent surge. While this may help, organizations such as Positive Exposure Kenya continue to work at educating people and changing how the culture sees people with this genetic difference.

Diversity in media

Representations of beauty in the media continue to change, and recently many organizations and outlets have included more diverse people in their campaigns. Adam Pearson tackled stigmas when the young actor, whose face is covered in tumors from neurofibromatosis, starred alongside Scarlett Johnansson in the 2013 film “Under the Skin.” In 2014 psychologist Dr. Danielle Sheypuk, who lives with spinal muscular atrophy, became the first person in a wheelchair to model on the runway at NY Fashion Week. A year later actress Jamie Brewer became the first person with Down syndrome model during the event. In 2013 a Swiss organization showcased mannequins modeled from real people with various disabilities in a Zurich storefront. The next year J.C. Penny revealed a similar campaign in its Manhattan location. Tess Holliday, the tattoo-covered size-22 model who started the #effyourbeautystandards hashtag, became the first of her size to sign with a major modelling agency.

These cases are inspiring, but far from being the norm. Fashion magazine covers rarely show people of diverse physical appearances. “The Fashion Spot” blog looked at 44 of the world’s leading fashion publications and analyzed their covers from 2014. They found only 19 percent of the people on the covers were non-white models. The annual TV report from GLAAD showed that while the U.S. Census estimates about 19 percent of Americans live with a disability, only about 1.4 percent of primetime television characters for the upcoming season will have a disability.

The problems not only come from the lack of representation, but also how people are represented and included in the process. In 2012 the BBC examined the roles that won leading actor and actress an Oscar. Tied for first, at 16 percent, was playing someone with a mental illness or physical disability. While such high-profile portrayals can have a positive impact, some people such as Pearson also want to see industries include people in the productions, not just represent them.

For more examples that challenge current conventions, visit the external resources or our “Beauty in Difference” gallery.

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