Showing posts with label ethics. Show all posts
Showing posts with label ethics. Show all posts

Thursday, December 20, 2012

Year of the fetus?

"Year of the fetus" is what the headline reads.  Sounds like a great honor right?  Insightful research and technology developing to improve the lives of children?  New technologies to test for the "perfect" child?   Is is really the demise of the fetus with down syndrome and other genetic disorders?  I found this article on The Scientist.


What are your thoughts?


Year of the Fetus

2012 saw the birth of a handful of non-invasive genetic prenatal tests, but the young industry faces growing pains as legal and ethical questions loom. 
By  | December 18, 2012






Flickr, abbybatchelderIn the not-so-distant past, testing an unborn baby for Down syndrome and other severe genetic disorders required a procedure with a long, gruesome needle and an unnerving risk of miscarriage. But this year, doctors and pregnant women around the country welcomed a new option: a painless genetic screen performed on a sample of the mother-to-be’s blood.
Advances in DNA sequencing have given doctors the power to probe the small fraction of fetal DNA coursing through a pregnant woman’s veins. Approximately 3 to 10 percent of the cell-free DNA in a mother’s blood belongs to her baby, and these fetal blueprints are enough to determine if the baby has the wrong number of certain chromosomes—the cause of some inherited diseases, including Down syndrome. And, instead of an invasive procedure at 15 to 20 weeks of pregnancy, doctors can conduct a genetic screen of the mother’s blood as early as week 10 with a standard blood draw.
Though the technology behind non-invasive prenatal genetic testing officially debuted in October of 2011, this year saw the birth of the first generation of options, with three companies now offering such tests and a fourth on the way. The trending technology has met an expanding market of expecting parents opting for prenatal testing, as well as industry squabbles over patent rights. But perhaps most importantly, the promise of more powerful fetal tests in the near future may breed a new host of ethical questions facing parents and geneticists alike, as they struggle with how much genetic information they want to know and can interpret about an unborn child.  
The birth of an industry
In 2005, the San Diego, California-based biotech company Sequenom licensed technology to detect fetal DNA, building on the results of a 1997 Lancet study that found fetal DNA circulating in maternal blood. But the company stumbled into a messy scandal in 2009 over the first version of a sequence-specific test for fetal trisomy 21—the cause of Down syndrome. Top executives resigned after the company confessed that they had inflated clinical trial results for the test, called SEQureDx, and the Securities and Exchange Commission filed charges against the former head of research.
The company regrouped in 2010, however, and began developing a more accurate sequencing-based test using massively parallel shotgun sequencing (MPSS). MPSS provides blanket sequencing of all the cell-free DNA in maternal blood, which “allows us to estimate the relative amount of each chromosome,” said Dirk van den Boom, executive vice president of research at Sequenom. “So, the theory is that if a pregnant woman has a fetus with, for example, trisomy 21, then the relative amount of chromosome 21 will be elevated.”
After a wave of impressive clinical trial data, the company launched MaterniT21 in October 2011, which tests for trisomy 21, trisomy 18 (Edward’s syndrome), trisomy 13 (Patau syndrome), and determines the sex of the fetus. The results of the Down syndrome test were particularly precise, demonstrating greater than 99 percent accuracy. But, by this point, Sequenom wasn’t alone in the market for long.
In March 2012, Redwood City, California-based biotech company Verinata Health released Verifi—also an MPSS-based test for trisomies 21, 18, and 13. And in May, Ariosa Diagnostics of San Jose, California, introduced Harmony, which detects the same three trisomies using a different method called chromosome-specific sequencing. A fourth company, Natera, also in Redwood City, is preparing to unveil its test, Panorama, which uses a single nucleotide polymorphism (SNP)-based sequencing method to detect the same trisomies, with the addition of sex aneuploidies, which cause diseases such as Turners syndrome (X0).
Nationwide, investors have estimated that the market for these tests could be more than $1 billion, and the competition is getting fierce. Indeed, Sequenom says its test has continued to soar in the past year. “We’ve seen an extraordinarily good adoption rate,” said Ronald M. Lindsay, executive vice president of strategic planning at Sequenom, who predicts that they’ll provide more than 100,000 tests in 2013.
But the other companies are anxious to grab a share of the market, which has led to dizzying legal battles. In the past year, Sequenom, which holds a patent for genetic-based fetal DNA testing, has sent letters warning of patent infringement to Aria Diagnostics, which Sequenom has since sued; Verinata Health, which has since sued Sequenom; and Natera, which also filed a complaint against Sequenom, claiming that their product doesn’t infringe on Sequenom’s patent. Though there’s been no legal resolution yet, the US Patent and Trademark Office did issue a new patent earlier this month (December 6) to Sequenom for detecting fetal aneuploidy using MPSS.
Meanwhile, all four companies are continuing to improve their technologies and push their tests onto the market. Verinata announced this month that it’s expanding its test to include sex-based aneuploidies. And Natera plans to release its test—which can be done at 9 weeks, instead of 10 and includes sex chromosome aneuploidies—early next year. “We’re confident that nothing is going to get in our way,” said Gautam Kollu, vice president of marketing for Natera.
Early adopters
Genetics postdoc and expecting mother Erin Osborne Nishimura is one of the many patients trying out the new tests. “We decided to do [a sequencing-based] test the day we talked to the genetic counselor,” said Osborne Nishimura, who works in Jason Lieb’s lab at the University of North Carolina at Chapel Hill (UNC). “Being in an ’omics lab, it’s really exciting to get in on that action early on.”
At 36, Osborne Nishimura is considered to be of “advanced maternal age,” so she and her husband (a plant biologist at UNC) began sifting through the options for prenatal tests. The standard lineup of options includes invasive diagnostics, such as amniocentesis and chorionic villus sampling (CVS)—which take samples of fetal tissues for a direct look at the baby’s DNA, but carry risks of birth defects and miscarriages—as well as blood-based hormonal tests, which are safer but less accurate. The couple also considered that one test might lead to more tests: any positive results from an indirect blood test would need to be followed up with an invasive test, upping the time, number of procedures, and medical bills.
There are also the costs of the individual tests to consider. Like many new tests, most insurance companies, which typically take at least 2 years to cover new technologies, do not yet pay for the genetic-based tests. But this month, the American College of Obstetricians and Gynecologistendorsed such tests, paving the way for insurance companies to expedite the process. In the meantime, Sequenom capped the cost of MaterniT21—usually around $2,000—at $235 for women who have health insurance.
In the end, Osborne Nishimura and her husband decided to take the plunge and purchase a genetic test for their unborn child. They went with the MaterniT21—the only genetics-based test offered by their doctor’s office—because they trusted the technology and were impressed by the clinical trial data. But they then delved into the unavoidable ethical implications of taking such a test. Though their results raised no red flags about the baby’s health—thankfully—the couple was forced to consider how they might handle undesirable results, including whether to continue the pregnancy if the test returns an undesirable report, or how to begin planning for lifelong care of a child with a severe disorder. While these weighty questions come with all prenatal testing options, as genetic technologies continue to advance, they may allow parents to test for a wider swath of genetic diseases, which will only make considerations dicier.
The first pressing new dilemma revolves around the ability to detect sex chromosome abnormalities, which is offered by Verinata’s test and will soon be offered by Natera. “This will affect the complexity of genetic counseling tremendously,” said Emily Hardisty, a certified genetic counselor and coordinator of reproductive genetic counseling at UNC hospitals, which now offers tests from Sequenom and Verinata and counsels 2,000 to 3,000 expecting mothers a year. “There’s a lot of educational material about Down syndrome and trisomy 13 and 18, which we’re currently routinely screening for, but there’s not a lot of information about the sex chromosome abnormalities,” Hardisty said. “And they’re not all that well understood.” Thus, if a baby is given a diagnosis of a sex chromosome disorder—some of which have no treatments—it will not clarify what a child’s life would be like 30 years later, or even directly after birth, she explained.
Moreover, Sequenom and Verinata’s tests detect chromosomal abnormalities by sequencing the entire fetal genome. “At this point in time, there’s so much information to filter through,” Hardisty said. “And some of it may have clear clinical implications and some of it may not.” Indeed, while the companies offering the tests insist they will continue to only provide information on relevant medical conditions, genomic data could potentially reveal additional information as more is understood about the genetics that underlie rare diseases and cosmetic traits.
And beyond the screen results, the data itself opens new questions. Genetic privacy regulations that may one day guide such tests are still in their infancy. Mothers like Osborne Nishimura will have to grapple with how to tell her child that his or her genome has been sequenced, and, she added, “they’re not just sequencing fetal DNA, they’re sequencing my DNA, too.”
But for Osborne Nishimura, the ethical unknowns were worth not having to worry about the “what if”s of genetic disorders for the rest of the pregnancy. “Because, lord knows I can make up all sorts of other things to worry about.”
Correction, 12.19.2012: The original article incorrectly identified Natera's upcoming non-invasive prenatal test as preNatus. The correct test name is Panorama, while the name of the clinical trial in which Panorama is being tested is called PreNatus. The Scientist regrets the error. 


Be gentle.

Sunday, November 25, 2012

Fake service dogs?

As a dog lover and a parent of a child with a special need, this is a story that brings disappointment to mind.  Service dogs are a necessary partner for many with a special need.  I have read about this trend of dog owners identifying their dog as a "service dog" when they are actually not.  Come on people.  A service dog belongs at it's owner's side.  I realize we all want to bring our dogs with us everywhere we go.  Instead of "breaking the rules" and calling your dog a service dog when he is actually not, let's advocate for changing the rules to allow our beloved pets to go everywhere with us.  Thoughts?


Fake service dogs provoke resentment, possible rule changes



Fake service dogs provoke resentment, possible rule changes


Palm Beach Post Staff Writer
Macy and Milo, blond Labs with constantly wagging tails, look and goof off like the other pooches at the dog park.
Their owner, 20-year-old college student Shoshana Rappaport, looks like the other doting dog moms, telling her dogs to knock it off when they play too rough and smothering them with hugs when they are worn out.
But Macy and Milo are not like the other dogs at the dog park. When Rappaport turns her head to the right and her neon orange hearing aid is visible, it is obvious that she also is not like the other dog moms at the park.
Macy and Milo are service dogs. They have been trained to alert Rappaport, who is profoundly deaf and also has vertigo, to vital sounds that many of us take for granted — car horns, door bells or a stranger approaching from behind. Shoshana also uses the dogs to support, stabilize and right her during vertigo episodes.
Because of the Americans with Disabilities Act, Macy and Milo can go wherever Rappaport goes — including restaurants, hotels, taxicabs and theaters. Also because of the ADA, Rappaport doesn’t have to prove she is disabled — a provision in the law designed to protect the privacy of people with disabilities and to prevent discrimination.
In fact, all any dog owner needs to do to be eligible for access privileges guaranteed under the ADA is to say that the dog is a service dog. And that has led some dog owners who do not have disabilities and whose dogs are not service dogs to use the ADA as a loophole to take their pets everywhere they go.
As more dogs are being trained to assist people whose disabilities are not readily apparent, such as deafness, post-traumatic stress disorder and diabetes, fake service dogs are seen more in public places, said John Ensminger, a New York attorney and author of the books “Service Dogs in America” and “Police and Military Dogs.”
“I think it’s definitely increasing,” said Ensminger, who said he is receiving more requests for interviews and more reports of fake dogs on his blog, The Dog Law Reporter. Among the most recent reports, show dogs being passed off as emotional support dogs, he said.
The phenomenon can infuriate people with real disabilities who rely on their highly trained dogs to lead as normal and active a life as possible.
“For everybody that needs a service dog, it’s a slap in their face for somebody to go on-line and get a service dog vest so they can go into a store or a restaurant with their dog,” said Joe Rainey, a Marine who was wounded in Vietnam.
Rainey, of Greenacres, relies on his service dog, Tanker, who has had mobility and stability training to assist Rainey when he is unsteady or cannot get up. “I am a Marine and it’s like someone pretending to be a Marine who was wounded while serving their country.”
The problem stems in part from the protections for the disabled set up under ADA. Businesses can ask only two questions when a dog enters their establishment: Is your dog a service dog? What tasks has the dog been trained to perform?
Businesses cannot require special identification for the dog or ask about the person’s disability. It does not matter whether the dog is wearing a service-dog vest or the owner’s disability is visible.
“A business person is very limited in what they can do when someone declares they have a service animal,” said Geoff Luebkemann, vice president of the Florida Restaurant and Lodging Association. “The average restaurant owner or hotelier just isn’t versed in this and they are concerned they will be the subject of an ADA lawsuit.”
Other laws supersede the ADA when it comes to air travel and housing, but the service-dog issue is posing special problems for airlines, especially those that no longer allow pets in the cargo hold.
Many passengers falsely believe that the ADA covers air travel and are surprised to learn they must abide by the stricter rules of the Air Carrier Access Act if they want to fly with their dog. Unlike the ADA, the Air Carrier Access Act allows airlines to require passengers with emotional support and psychiatric service dogs to prove they are disabled and that their dog is trained to assist them.
Many airlines require a letter on the letterhead of a licensed psychiatrist, psychologist or clinical social worker stating that the passenger has a medically recognized mental or emotional disability and is under the professional’s care. The letter must be dated within one year of the flight and also include the state in which the professional is licensed.
“People are going to be hard pressed to get psychologists and psychiatrists to sign letters,” Ensminger said. “I think this is an area where we are going to see a lot of friction.”
Nevertheless, there are enough passengers trying to board with emotional support and psychiatric service dogs — which fly in the cabin for free — that agents at ticket counters have been provided written guidelines on the law and the U.S. Department of Transportation has opened up rule-making for changes in rules on allowing such dogs on planes.
Ensminger owns a therapy dog, which is trained to go to schools, hospitals, nursing homes and other institutions to comfort and offer companionship. Therapy dogs are not protected by the ADA or the Air Carriers Act and although he knows he could pass her off as a service dog and fly with her to his winter home in Arizona, he does not. Instead, he drives the 2,600 miles.
“To be honest, I’ve been tempted,” Ensminger said. “But she is a therapy dog, not a service dog.”
When it comes to allowing service animals in condos and apartments with no-pet or weight-limit rules, the ADA is again trumped by another federal law — the Fair Housing Act.
Unlike the ADA, which defines dogs and occasionally miniature horses as service animals, the FHA is broader and protects other species, such as cats and birds.
Just as restaurants and airlines are seeing more unqualified service dogs, landlords and condo associations say tenants are seeking exceptions for their pets under the FHA.
“The trend has gone up and down since this service dog issue first arose,” said West Palm Beach attorney John Sheppard, who specializes in condominium and homeowner association litigation. “When it initially came up, there was a fairly high standard the owner had to meet to keep the dog.”
Those standards loosened and “if they could show a doctor’s prescription saying they needed a dog for some reason, that was enough to pass muster,” Sheppard said. The pendulum is swinging back and now condominium associations can ask specific questions about the disability and how the animal assists, Sheppard said.
Still, he said, “There are people who come in and have a dog and they say, ‘It’s my sister’s dog. I’m just watching it.’ Then they come out and say they have a disability.”
Is there a solution?
Corey Hudson, secretary of Assistance Dogs International, which has a well-known accreditation program that sets minimum standards for behavior and training, suggests some form of government-sanctioned certification for service dogs.
“We all get drivers’ licenses after somebody impartially figures out that you are capable of driving,” Hudson said.
Ensminger sees problems with that approach. Who will set those standards and how much will credentials cost? Professionally trained service dogs can cost more than $20,000. Each dog is individually trained to meet the specific needs of its owner’s disabilities. Many people with disabilities are on limited budgets and train their dogs themselves.
“What I’m afraid of is that if the government doesn’t want to get in the business and turns it over to private entities, that will mean people will essentially have to pay a significant amount of money to some organization that will bless their service dog,” Ensminger said. “I see that as a big problem.”
Rappaport, who herself trained Macy and Milo, has her own solution: confronting pet owners and businesses when she encounters misbehaving dogs wearing service dog vests.
“These people should be grateful they don’t have a disability,” Rappaport said. “Do they think we want to be disabled so we can take our dogs anywhere? Don’t they realize we would trade our service dogs to get rid of our disabilities?”

Service dog laws
Three federal laws grant service dogs special privileges:
Americans with Disabilities Act: Gives service dogs access to public places, such as restaurants, stores and offices. Owner may not be questioned about disability but may be asked about the tasks the dog performs. Harnesses or leashes must be worn at all times unless it interferes with the dog’s work.
Air Carrier Act: Enables service dogs to fly in cabin of airplane. Passengers with emotional support or psychiatric service dogs may be asked to provide proof of disability and treatment from mental health professional.
Fair Housing Act: Allows people with disabilities to keep emotional-support animals, even when landlord’s or association’s policy prohibits pets. Allows limited questioning about disability and animal support.
Types of support animals
Federal laws give access privileges to service dogs, including guide and hearing dogs. Therapy dogs and emotional support animals can be denied access to public places, airplanes and housing.
Guide dogs: Highly disciplined and trained service dogs. Assist blind and visually impaired people by avoiding obstacles, stopping at curbs and steps, and negotiating traffic.
Hearing dogs: Service dogs trained to alert the deaf and hard of hearing to common sounds, such as a doorbell, telephone, baby crying or smoke alarm.
Service dogs: Provide assistance unrelated to vision or hearing disabilities. Individually trained to meet unique physical, medical or psychiatric needs of owner.
Therapy dogs: Provide comfort and companionship to people in hospitals, nursing homes and other institutions. To encourage petting and avoid confusion with service dogs, often do not wear vests seen on service dogs.
Emotional support animal: Domesticated animals — not necessarily dogs — that provide therapeutic companionship and affection. No training required beyond that of a pet.


Be gentle.

Wednesday, August 22, 2012

"The Senior Prank" Inspiring, empowering. NO MORE BULLYING

Teasing, Taunting.  Bullying.  No matter what words you use, it is still harmful and sometimes deadly.  And a parent's worst nightmare.  I am sure we all worry about our child being bullied, but I know I worry more about children with special needs.  We all know they can easily become the target of bullying and it is very hard for them to defend themselves.  It is up to us to advocate and educate.




The numbers continue to rise every month...

- It is estimated that 160,000 children miss school every day due to fear of attack or intimidation by other students. Source: National Education Association.
- American schools harbor approximately 2.1 million bullies and 2.7 million of their victims. Dan Olweus, National School Safety Center.
- 1 in 7 Students in Grades K-12 is either a bully or a victim of bullying.
- 56% of students have personally witnessed some type of bullying at school.
- 15% of all school absenteeism is directly related to fears of being bullied at school.
- 71% of students report incidents of bullying as a problem at their school.
- 1 out of 20 students has seen a student with a gun at school.
- 282,000 students are physically attacked in secondary schools each month.
- Those in the lower grades reported being in twice as many fights as those in the higher grades. However, there is a lower rate of serious violent crimes in the elementary level than in the middle or high schools.
- 90% of 4th through 8th graders report being victims of bullying
- Among students, homicide perpetrators were more than twice as likely as homicide victims to have been bullied by peers.
- Bullying statistics say revenge is the strongest motivation for school shootings.
- 87% of students said shootings are motivated by a desire to “get back at those who have hurt them.”
- 86% of students said, “other kids picking on them, making fun of them or bullying them” causes teenagers to turn to lethal violence in the schools.
- 61% of students said students shoot others because they have been victims of physical abuse at home.
- 54% of students said witnessing physical abuse at home can lead to violence in school.
- According to bullying statistics, 1 out of every 10 students who drops out of school does so because of repeated bullying.
- Harassment and bullying have been linked to 75% of school-shooting incidents.


Bullying can take many forms but it usually includes the following types of behavior:
• Physical – hitting, kicking, pinching, punching, scratching, spitting or any other form of physical attack. Damage to or taking someone else’s belongings may also constitute as physical bullying.
• Verbal – name calling, insulting, making racist, sexist or homophobic jokes, remarks or teasing, using sexually suggestive or abusive language, offensive remarks
• Indirect – spreading nasty stories about someone, exclusion from social groups, being made the subject of malicious rumours, sending abusive mail, and email and text messages (cyber bullying).
• Cyber Bullying - any type of bullying that is carried out by electronic medium. There are 7 types including:
1. Text message bullying
2. Picture/video clip bullying via mobile phone cameras
3. Phone call bullying via mobile phones
4. E-mail bullying
5. Chat-room bullying
6. Bullying through instant messaging (IM)
7. Bullying via websites



Bully Related Suicide

Suicide remains among the leading causes of death of children under 14. And in most cases, the young people die from hanging. (AAS)
A new review of studies from 13 countries found signs of an apparent connection between bullying, being bullied, and suicide. (Yale School of Medicine)
Suicide rates among children between the ages of 10 & 14 are very low, but are "creeping up." (Ann Haas, Director of the Suicide Prevention Project at the American Foundation for Suicide Prevention)
The suicide rate among young male adults in Massachusetts rose 28 percent in 2007. However, that does not reflect deaths among teenagers and students Carl's age. (Massachusetts Dept. of Public Health, in a report released April 8, 2009)
• Since 2002, at least 15 schoolchildren ages 11 to 14 have committed suicide in Massachusetts. Three of them were Carl's age. ("Constantly Bulled, He Ends His Life at Age 11," by Milton J. Valencia. The Boston Globe, April 20, 2009)
• Suicide rates among 10 to 14-year-olds have grown more than 50 percent over the last three decades. (The American Association of Suicidology, AAS)
• In 2005 (the last year nationwide stats were available), 270 children in the 10-14 age group killed themselves. (AAS)



In a 2007 study, 86% of LGBT students said that they had experienced harassment at school during the previous year. (Gay, Lesbian and Straight Education Network -- GLSEN)
Research indicates that LGB youth may be more likely to think about and attempt suicide than heterosexual teens. (GLSEN)
In a 2005 survey, students said their peers were most often bullied because of their appearance, but the next top reason was because of actual or perceived sexual orientation and gender expression. ("From Teasing to Torment: School Climate of America" -- GLSEN and Harris Interactive)
According to the Gay, Lesbian and Straight Education Network 2007 National School Climate Survey of more than 6,000 students...
• Nearly 9 out of 10 LGBT youth reported being verbally harassed at school in the past year because of their sexual orientation
• Nearly half (44.1 percent) reported being physically harassed
• About a quarter (22.1 percent) reported being physically assaulted.
• Nearly two-thirds (60.8 percent) who experienced harassment or assault never reported the incident to the school
• Of those who did report the incident, nearly one-third (31.1 percent) said the school staff did nothing in response


It is everywhere.  And those who are bullied need us to advocate, educate and support the end of bullying.


Mother's plea after young boy with Down syndrome publicly teased on social networking site Facebook




josh2
josh2
FAIR GO: Josh Finters enjoys time with his dog and is unaware of the taunts young children have been directing at him. Source:Quest Newspapers
Bayside mother Julie Finter has spoken out about a bullying incident directed at her son Josh who suffers down syndrome. She claims children filmed their taunts and then put the footage on Facebook
The serious nature of her complaint to the community needs to be told, and what better way to do it than through the eyes of a mother.
Julie has five children and her middle son Josh was born with down syndrome 23 years ago.
When I met the family on Monday I noticed Josh's cheeky and trusting nature, along with a big passion for playstation and riding his bike.
He has no idea the three young girls who filmed him were teasing him about his disability. And he especially doesn't understand they uploaded the footage on Facebook.
Julie says by exposing this incident she hopes to encourage parents to talk to their children about respecting others.
``Most people are really good with Josh but this latest incident has really concerned my family and this is why I came forward,'' she said

While Julie applauds the school involved and believes the incident has been resolved she still wanted to go public.
``Josh hasn't got a mean bone in is body and I wanted to get him out there to give him an identity.''
``I want people to realise this has happened and not just hide this away.''

A soon to be released film, "The Senior Prank" hopes to educate about the harmful ways of bullying.

'The Senior Prank' Movie Filmed at Great Harvest Bread Co. in Lorton

Director Donald Leow, of Clifton, tackles bullying and redemption in the independent film.




Actor Frank Stephens and Director Donald Leow after filming a scene for "The Senior Prank", at Great Harvest Bread Co. in Lorton on Monday, Aug. 20, 2012. 
On Monday, Lorton's Great Harvest Bread Co. hosted "The Senior Prank," a new independent film about high school bullies who, as the ultimate prank, set up a girl with Down Syndrome to be the homecoming queen.
The scenes were shot just outside the coffee shop and inside at the counter. It was a near-perfect day for shooting — overcast and cool. The film crew worked from 8 a.m. - 5 p.m., and at the end of the day, the work will amount to less than five minutes worth of footage. 
'The Senior Prank' Plot 
New student Cara Jarvis (Stacey Bradhaw) wants to be popular, but feels that her new friendship with Grace (Amber House), a student with Down Syndrome, is holding her back. In the struggle to get the guy and win popular friends, Cara sets Grace up to be the homecoming queen as a senior prank. But the plan backfires and Cara is humiliated. 
"This is more a movie about bullying than it is about Down Syndrome," said director Donald Leow, of Clifton. "The finished product will be 90-100 minutes long, and if a major distributor picks up this film, I feel like a few acting careers will go far."
The message of the film is universal, said executive producer Steve Woolwine. "I think that everyone has been bullied in some form or another throughout their lives," he said. "The trouble with our society is that you can be a bully even if you don't stand up and say that it's wrong. You might not be committing the act, but you're with the crowd who does."
Monday's scenes involved a conversation between Cara and her mom, Sharon (Kera O'Bryon) outside the shop, and then inside at the counter with Great Harvest Baristas Quinn (Sara Cicilian) and Ben (Frank Stephens). Ben has Down Syndrom, and Quinn openly mocks him in front of customers. 
"Yeah, my character basically has no shame," said Cicilian, "but she turns over a new leaf by the end of the film. I'm definitely not this mean in real life." 
Great Harvest employees had the opportunity to be background actors. "We were walking up to check things out and the guy with the blue shirt asked, 'Are you my extras?' and we said, 'We are if you want us to be!'" said Lynn Schmauder who was filmed along with her 16-year-old daughter, Jill. 
"I didn't think there would be so much equipment!" said Great Harvest co-owner Jeff Connelly to Patch. "We're usually closed on Monday, but we're actually doing pretty good business." 
Six months from now, "The Senior Prank" will be edited and ready for distribution. The seemingly innocent conversations that will go on for less than five minutes took about eight hours to film on Aug. 20, 2012. 



Let's END BULLYING NOW!



Be gentle.

Saturday, April 21, 2012

Ethics, making money, and Down Syndrome

Parents all want the perfect pregnancy and a perfect child.  What is perfect?  Why is perfect important?  Is being perfect the most important thing?  Is peer pressure to have that perfect child so influential that some one would be willing to end their pregnancy?  Are companies more concerned with making money than actually caring about the parents and unborn babies?


I do not think potential parents are given enough information when faced with a prenatal diagnosis of Down Syndrome or other potential disability.  When we were given the prenatal diagnosis of Down Syndrome for our son, the first thing the doctor asked was "Do you want to terminate this sick baby?"  We did not go out looking to get a prenatal screening.  We declined the testing when it was offered at the regular time that prenatal testing is done during a pregnancy.  An abnormality was found during a routine ultrasound while we were pregnant was discovered.  We had prenatal testing to determine what was causing the abnormality.  We were given our diagnosis.  And in the next breath, the doctor asked if we wanted to terminate.......  What, no discussion, education about Down Syndrome.  Just get rid of the sick baby.  WOW.  How many other parents are given the option of terminating before any other options are discussed?


We did not give termination one thought.  We wanted to know what we could do to keep both of our beautiful babies healthy.  We came out fighting from the moment of our diagnosis.  Fighting for the rights of our sons.  


Lately in the news, new testing for Down Syndrome have been making a splash in the prenatal market.  And companies are makes lots and lots of money off of this testing.  And more companies are jumping into the screening market.  With prenatal screening should come the responsibility of education of parents given a diagnosis of a child with a disability.





Sequenom Increases Expected Billings for MaterniT21 Plus to 40,000 in 2012


NEW YORK (GenomeWeb News) – Sequenom today raised its estimates for the number of billed MateriT21 Plus tests for 2012 to 40,000 as adoption of the test accelerated during the first quarter.
The San Diego-based firm had previously forecast 25,000 billings for the non-invasive fetal aneuploidy test for the year.
In the first quarter, Sequenom saw more than 12,700 total tests, including more than 4,900 MaterniT21 Plus tests, accessioned in Q1, it said. Based on the volume processed during the last week of the quarter, the annualized run rate for MaterniT21 Plus would be more than 30,000 tests.
Sequenom Chairman and CEO Harry Hixson said that the firm's lab, the Sequenom Center for Molecular Medicine, has seen samples received and billed in early 2012 increase weekly.
"We expect this trend to continue with Sequenom Center for Molecular Medicine's sustained commercial efforts throughout the year and have increased the internal goal to reflect our optimistic outlook," he said in a statement.
Sequenom's first-quarter earnings are scheduled for release after the close of the market on May 3.
In early Monday trade on the Nasdaq, shares of Sequenom were up 10 percent at $4.39.

Sequenom Inks Deal with MultiPlan to Include MaterniT21 Plus Test


NEW YORK (GenomeWeb News) – Sequenom today announced an expanded agreement with healthcare cost management firm MultiPlan to include the MaterniT21 Plus LDT test for fetal aneuploidies.
As a result of the deal, MultiPlan's network of 900,000 providers will have access to Sequenom's test for trisomy 21, 18, and 13. The test was launched in October.
One of Sequenom's goals for 2012 is to sign two major national insurers as well as smaller payors in order to drive up adoption of the test. Earlier this week, the companyincreased its estimates for the number of billed MaterniT21 tests to 40,000 in 2012, up from a previous forecast of 25,000.


Early prenatal test raises ethical questions

February 22, 2012 11:09 AM
By
Erica Hil
l




Prenatal testing has turned into an unlikely campaign issue. Presidential candidate Rick Santorum said this week that some tests, in his words, "encourage abortions."
"CBS This Morning" took a look at a new test that reveals birth abnormalities at a much earlier stage. The test is sure to give many more pregnant women and their families a lot to think about.
Recent advancements in genetics have helped doctors develop a safer test for Down syndrome than amniocentesis, an invasive procedure that can identify many genetic disorders but can also result in miscarriage.
The new test, called the MaterniT21, can be administered at just 10 weeks and is nearly 100 percent accurate. The test works by analyzing the mother's blood and counts fragments from the fetus's DNA to identify the presence of an extra chromosome, which can signify Down syndrome.
According to Dr. Brian Skotoko, a medical geneticist at Children's Hospital Boston, this is the beginning of a new era of prenatal screening.
"There is no risk to the fetus - a simple blood drop from your arm. This new test raises a provocative question of how much do we test for and do we as a society draw the line?" Skotoko told CBS News.
Expectant parents are routinely offered prenatal testing for various genetic disorders -- not just Down syndrome. The tests may lead to more difficult decisions for many parents.
Melanie McLaughlin, a mother who decided to go through with her pregnancy following a test that indicated her baby would have Downs syndrome, said of the latest test, "If it's not for Down syndrome what is it for? Is it for homosexuality? Is it for breast cancer? Is it for Alzheimer's? Is it for, you know, autism? Because you're going to need to ask those questions, because they're coming."

The earlier testing means mothers are going to be challenged with a decision earlier in their pregnancies, Dr. Paul Root Wolpe, director of the Center for Ethics at Emory University, said on "CBS This Morning."
"If they do choose to terminate the pregnancy, it will be a less complicated procedure," Wolpe said. "... More and more women are going to be facing tough decisions as this test and similar tests are developed."
Research from the U.K. suggests that for most women -- more than 90 percent studied -- would have an abortion if she knew she were having a baby with Down syndrome.
"Do you think this could lead to a world without Down Syndrome kids," Gayle King asked.
Wolpe said it's unlikely. In the U.S., that statistic on women aborting over Down syndrome may be lower.
"Some women will not get the test, other women choose...not to abort even though they have the information," Wolpe said. "... I don't think that we're going to end up, at least in the foreseeable future, in a world without kids with Down syndrome, and many parents, I think actually take the path (of not aborting) and end up very glad they did."





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It is a blog hop today.
http://downwitdat.blogspot.com/

Be gentle.