What is the ethical dilemma for Amelia

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Tuesday September 21, 2018
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Little Amelia Sloan is a pioneer: Shortly after her birth, scientists took drops of the healthy baby's blood to map her genetic code. 

Amelia is part of a large research project outside the nation's capital that is decoding the DNA of hundreds of infants. New parents in a few other cities soon can start signing up for smaller studies to explore if what's called genome sequencing — fully mapping someone's genes to look for health risks — should become a part of newborn care. 

It's full of ethical challenges. 

Should parents be told only about childhood threats? Or would they also want to learn if their babies carried a key gene for, say, breast cancer after they're grown? Could knowing about future risks alter how a family treats an otherwise healthy youngster? And how accurate is this technology — could it raise too many false alarms? 

This is the newest frontier in the genetic revolution: how early to peek into someone's DNA, and how to make use of this health forecast without causing needless worry. 

"This was something that was looming over the horizon," said Dr. Alan Guttmacher, a pediatrician and geneticist at the National Institutes of Health. Last month, NIH announced a $25 million, five-year pilot project in four cities — Boston, San Francisco, Chapel Hill, N.C., and Kansas City, Mo. — to start answering some of the questions before the technology is widely offered for babies. 

Today, the 4 million U.S. babies born annually have a heel pricked in the hospital, providing a spot of blood to be tested for signs of at least 30 rare diseases. This newborn screening catches several thousand affected babies each year in time for early treatment to prevent death, brain damage or other disabilities. It's considered one of the nation's most successful public health programs. 

A complete genetic blueprint would go well beyond what that newborn blood spot currently tells doctors and parents — allowing a search for potentially hundreds of other conditions, some that arise in childhood and some later, some preventable and some not. 

"If I truly believed that knowing one's genome was going to be transformative to medicine over the next decade or more, then wouldn't I want to start generating that information around the time of birth?" asked Dr. John Niederhuber, former director of the National Cancer Institute who now oversees one of the largest baby-sequencing research projects to date. 

At Niederhuber's Inova Translational Medicine Institute in Falls Church, Va., researchers are mapping the genomes of newborns, along with their parents and other relatives for comparison. The long-term goal of the privately funded study is to uncover genetic patterns that predict complex health problems, from prematurity to developmental disorders. 

But the experimental tests will turn up some gene mutations already well-known to cause serious ailments, and participating parents must choose upfront whether to be told. They don't get a full report card of their baby's genes. Only ones that cause treatable or preventable conditions — so-called medically actionable findings — are revealed, to the family's doctor. That means in addition to pediatric diseases, parents also could learn whether a baby carries a particular breast-cancer-causing gene, information useful once she reaches young adulthood. 

Nurse Holly Sloan was eager to enroll daughter Amelia, although she thought hard about how she'd handle any bad news. 

"If it was something that we could hopefully prevent through diet or exercise or some kind of lifestyle change, we could start with that as early as possible," said Sloan, of Warrenton, Va. "I guess I'm just the type of person, I would rather know and address it." Five months after Amelia's birth, she hasn't gotten any worrisome results. 

Until now, genome sequencing has been used mostly in research involving curious adults or to help diagnose children or families plagued by mysterious illnesses. 

But many specialists say it's almost inevitable that DNA mapping eventually will be used for healthy young children, too, maybe in addition to traditional newborn screening for at least some tots. It takes a few drops of blood or a cheek swab. And while it's still too costly for routine use, the price is dropping rapidly. Whole genome sequencing is expected to soon come down to $1,000, what it now costs for a more targeted "exome" sequencing that maps only certain genes and may be enough. 

The NIH decided this was a window of opportunity to explore different ways this technology might be used. One of the four teams — at Children's Mercy Hospital in Kansas City — will test rapid gene-mapping to speed diagnosis of sick babies in intensive care. 

Another will look for narrow sets of genes important in childhood, such as those involved with immune disorders not detected by today's newborn screening or that alter how a child processes medication. "It's not going to be some sort of fishing expedition throughout the genome," said Dr. Robert Nussbaum of the University of California, San Francisco. 

The two other projects — at Brigham and Women's Hospital in Boston and the University of North Carolina, Chapel Hill — will go a step further by enrolling healthy infants as they explore what kind of information parents want about their babies' future. 

"We aren't even sure that genome-scale sequencing in newborns is really a good idea," cautioned UNC lead researcher Dr. Jonathan Berg in a recent Facebook chat to alert the community about the study. Rather than a one-time mapping, it's possible that "we will use targeted sequencing at certain times in a person's life, when that specific information will actually be medically useful." 

For those pioneering babies whose DNA is being mapped already, researchers are "trying to figure out what is legal, versus ethical, versus good medicine" in revealing results, said Joe Vockley, Inova Translational Medicine Institute's chief science officer. 

Mom and Dad may be told something their child, once grown, wishes hadn't been revealed. Other findings may be withheld now that would be good to know years later, as new treatments are developed. 

"This is a living, breathing problem," Vockley said, "not a static decision that's made, and it lasts for all time."

Case Study-Week 5 Ethics in Nursing

Amelia Wilkerson is a new nurse on a 35-bed medical unit and is enjoying her first few months there. She particularly enjoys her new patient, Katy Palmer, a 32-year-old mother of two little girls who has been admitted for fatigue and low blood counts. Katy had a bone marrow biopsy soon after admission, and she and her husband are anxiously waiting for the results. Late in the afternoon, Amelia notices that the preliminary report indicates that Katy has acute myelogenous leukemia (AML), a very serious, usually fatal form of leukemia.

When Amelia goes to check Katy's vital signs at 4 P.M., Katy asks her if the results are back yet. Amelia responds truthfully that she does not know if Katy's doctor has seen the results yet. Katy persists, "...but you have seen them, what is my diagnosis?" Amelia acts as if she had not heard the question. Katy then said, "It is bad, then."

1.      What is the specific ethical dilemma for Amelia?

2.      What principles from the ANA Code of Ethics can guide Amelia's responses?

3.      What actions should the nurse take and what is the ethical basis for the actions that you believe she should take?

Amelia Earhart says, "The most difficult thing is the decision to act, the rest is merely tenacity. The fears are paper tigers. You can do anything you decide to do. You can act to change and control your life; and the procedure, the process is its own reward." This quote shows precisely what kind of life style Earhart had her whole life and what kinds or types of decisions she made in her life common normal life until the moment when Amelia was in high school getting her first sight of a real plane. Amelia Earhart was born on July 24, 1897 in Atchison, Kansas and is most well known for her disappearance than for her accomplishments such as she was the first female pilot to cross the Atlantic Ocean. Amelia was a tomboy in a somewhat poor family with a drunken father. Amelia still did not know what she wanted to become until December 28, 1920 Amelia got her first ride in a plane that would change her life forever. After that first ride, Amelia wanted to be a pilot no matter what.( Reyburn, Susan) What makes a hero is the personality to be liked and an iron strong will to accomplish their goal. If you aren't liked by a couple of haters that is normal and given in life but having a personality that most people like, makes people respect you because you are just being yourself which most people don't do. Without a will you wouldn't do anything with your life but without a strong will you would never follow through with your plan or goal for your life. People look up to others that have done something that cannot possibly happen also known as the impossible, to do the impossible and make it possible you must have a will to keep on trying or else you would never reach that level. This is why for a hero a strong will is important. Amelia Earhart natural leader like behavior, strong willed personality, and her bravery that helped the pilot part of her succeeded at many record-breaking flights this is why she's a hero.

Amelia's personality calls others towards her and respects her as a leader character. Susan Reburn supports my claim that Amelia is a leader as you can see here: The flight from Honolulu was attempted with no thoughts of proving anything aeronautical," she wrote. I can only hope one more passage across that portion of the pacific succeeds in making a little more plainly the pathway over which the inevitable air service of the future will fly. It me, also, it seemed good training for other hoped-for long-distance flights..." She continued to win over her critics." (Reyburn, Susan). The word Amelia spoke when the critics asked her why she is flying is inspiring and opens your eyes that everything you do has a purpose when ever it's for the greater good of the future or because you want to have fun. These moving words that moved the critic is a good example that Amelia is a leader. Finally, it should be argued that: "Earhart reported in the fall of 1917 that "I am Vice President of the class.... Then I am secretary vote to a Red Cross chapter we are organizing.... Then I am secretary and treasurer of Christian Endeavor- no sinecure. It has been rather an institution of torture heretofore and not well liked but we are trying to... make it stand for something.... I am elected too to write the senior song, but you know the more one does, the more one can do." (Reyburn, Susan). This quote states that she is given many different positions of authority because of her popular personality and her can do attitude about things. At everything she does she thinks about that's going on and how she is acting accordingly to the situations. These qualities are what make people look up to you making you a hero. These quotes show that Amelia is a Leader. Earhart had been given many responsibilities in her life based on the way she acts and the decisions she chose for her own life. People looked up to her because of this, showing that she was respected as a leader.

(http://www.radcliffe.harvard.edu/schlesinger-libra ())

Amelia Earhart has a strong heart and mind for what she wants to do. The information from "Women Who Dare: Amelia Earhart" shows that Amelia has strong senses of morals and will, for example: "There she had seen something that "changed the course of existence for me." She wrote of watching four Canadian World War 1 veterans "on crutches, doing their heart-breakingly best to walk together down King Street...and it came home to me then that war wasn't knitting sweaters and selling Liberty bonds..The Canadian Red Cross took me in training and I qualified as a nurse's aid." (Reyburn, Susan). Amelia volunteered to be in the Red Cross even though it was in the middle of a war and it could have been just safe and sound at home. She herself chose to go and help, and not turn her back on the hurt. Most people like Amelia said would sell liberty bonds and make some things to "help" the solders but not her, she went all out to help them personally. It took a strong moral compass to be able to give up the comfort of home to go and help in the war this shows her moral values are strong.Amelia Earhart strong will seen when: "After graduating from Hyde Park High School in 1915, Earhart attended Ogontz, a girl's finishing school in the suburbs of Philadelphia. She left in the middle of her second year to work as a nurse's aide in a military hospital in Canada during WWI, attended college, and later became a social worker at Denison House, a settlement house in Boston." (Reyburn, Susan). This quote also shows that Amelia is strong because even though she was in the middle of her second year of school she just decided to leave and go become a nurse and help the soldiers personally. It was not like she didn't think education wasn't important, shown by the college she attended afterwards, it was just she decided that helping out in the war was more important than her education at the moment. It takes strong determination to help to be able to just stop in the middle of her education and not make an excuse that she needs to finish school before she could help the solders. Amelia's is strong because she was able to push for her goals and dreams even though generally, if you were thinking about your life in the future, it was not the bests of ideas. She pushed herself on because she knew it was the right thing to do and she genuinely just wanted to help the people who needed help.

Each decision Amelia makes needed great courage, also known as bravery, making her a hero. Susan claims that, "On Jan. 11-12, 1935, she became the first pilot to fly alone from Hawaii to the United States mainland, a challenge which had hitherto taken several lives." (Dictionary of American)."Only a month earlier, Charles Ulm and his crew had died in the pacific while flying from California to Hawaii. -----"(Reyburn, Susan)Even though a couple of people already died attempting this flight already just a couple months before, even though the deaths of the past pilots are still fresh in the people's minds including her she still continued the attempt at this daring act. Most people would second-guess themselves about the plan there about to do if someone else already attempted your same plan and failed. Amelia however still flew showing bravery. Earhart's Bravery is observed when: "First woman and the second person to solo the Atlantic. On May 20, 1932, five years to the day after Lindbergh, she took off from Harbor Grace, Newfoundland, to Paris. Strong north winds, icy conditions and mechanical problems plagued the flight and forced her to land in a pasture near Londonderry, Ireland." (The Official Website of Amelia) "Earhart thought her chances of landing safely on the other side might be one in ten" (Reyburn, Susan) There was a small chance of living for many of the flights she took but she destroyed all odds even her own and succeed blowing all expectations away. Even though she was faced with adversity during her flight, she did not just give up and pray, she fought for her life and won being able to land in a field in Ireland. It is either really brave or really stupid to go against even your own expectation but ether way works she survived in the end and made a mark on history that she was the first women to fly solo across the Atlantic. Amelia's bravery is show when she attempted many dangerous attempts that never guarantied her survival. She still attempted them fully aware the about consequences at hand if she should see failure. She followed through with her plan and in the end she successed with these two "first time" flights.

All this evidence shows that Amelia had a leader-like, strong willed personality, and her bravery to try to accomplish dangerous stunts attracted people making her a hero. Amelia kept on going for anything and everything she thought she herself wanted to do. Most of her decisions was made from what she thought was the correct thing to do, not what someone else thought was right it was what she thought was right. In addition, Amelia's determine personality made people like and rely on her making her a natural born leader. Finally, Amelia bravery helped her follow through with her stunts making her fear dissipate letting her break many records during her flights. Amelia Earhart is an inspiration because she has done so much in her life even though she did not know what she was going to be, Amelia was still amazing at everything she did. When Amelia did find the one thing she loved, she went for it with all her heart and did not waver at the thought that she might have made a mistake. Amelia stood up to everyone else that said she would not make it and proved them wrong. Earhart made pathways for girls and people everywhere. Because of her actions and easygoing personality people liked her, which is a sign of being a hero. Amelia was a strong woman fallowing through what she thought was the right thing to do and defying everything she thought was wrong, still remembering other people around her. These are the reasons why Amelia Earhart is the person I look up to, she is my hero.

Work cited

"Amelia Earhart." Explorers & Discoverers of the World. Gale, 1993. Biography In Context. Web. 7 May

10, 20132013.

"Amelia Mary Earhart." Dictionary of American Biography. New York: Charles Scribner's Sons, 1944.

Biography In Context. Web. 9 May 2013.

Reyburn, Susan. Amelia Earhart. San Francisco: Pomegranate, 2006. Print

"The Official Website of Amelia Earhart." The Official Website of Amelia Earhart. Family of Amelia

Earhart, n. d. Web. 02 May 2013.

The beliefs, viewpoints and opinions expressed in this hero submission on the website are those of the author and do not necessarily reflect the beliefs, viewpoints and opinions of The MY HERO Project and its staff.