How can consumers in CAMPO be sure a genetic test is valid and useful?
Before undergoing genetic testing, it is important to be sure that the test is valid and useful. A genetic test is valid if it provides an accurate result. Two main measures of accuracy apply to genetic tests: analytical validity and clinical validity. Another measure of the quality of a genetic test is its usefulness, or clinical utility.
Analytical validity refers to how well the test predicts the presence or absence of a particular gene or genetic change. In other words, can the test accurately detect whether a specific genetic variant is present or absent?
Clinical validity refers to how well the genetic variant being analyzed is related to the presence, absence, or risk of a specific disease.
Clinical utility refers to whether the test can provide information about diagnosis, treatment, management, or prevention of a disease that will be helpful to a consumer.
All laboratories that perform health-related testing, including genetic testing, are subject to federal regulatory standards called the Clinical Laboratory Improvement Amendments (CLIA) or even stricter state requirements. CLIA standards cover how tests are performed, the qualifications of laboratory personnel, and quality control and testing procedures for each laboratory. By controlling the quality of laboratory practices, CLIA standards are designed to ensure the analytical validity of genetic tests.
CLIA standards do not address the clinical validity or clinical utility of genetic tests. The Food and Drug Administration (FDA) requires information about clinical validity for some genetic tests. Additionally, the state of New York requires information on clinical validity for all laboratory tests performed for people living in that state. Consumers, health providers, and health insurance companies are often the ones who determine the clinical utility of a genetic test.
It can be difficult to determine the quality of a genetic test sold directly to the public. Some providers of direct-to-consumer genetic tests are not CLIA-certified, so it can be difficult to tell whether their tests are valid. If providers of direct-to-consumer genetic tests offer easy-to-understand information about the scientific basis of their tests, it can help consumers make more informed decisions. It may also be helpful to discuss any concerns with a health professional before ordering a direct-to-consumer genetic test.
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Something that you may to know about Saudi Arabia
"The Kingdom ... strongly condemns and denounces this cowardly terrorist act that is rejected by true Islamic religion as well as the rest of the religions and beliefs."
So reads the statement issued by Saudi Arabia, where I grew up, the day the offices of "Charlie Hebdo" came under attack, with the loss of 12 lives.
Last Sunday, to show further solidarity with the victims, the Saudi ambassador to France joined other world leaders in Paris for a unity rally to celebrate free speech.
This is consistent with the face Saudi Arabia presents to the outside world. Visitors to the website of the Saudi embassy in Washington are invited to "learn ... how the Kingdom´s political system is rooted in Islam´s traditions which call for peace, justice, equality, consultation and respect for the rights of the individual."
Just two days before the Paris rally, my friend Raif Badawi was removed, in shackles, from a mini-bus outside the Al-Jafali mosque in Jeddah as a large crowd gathered around him after Friday prayers. According to eyewitnesses, he closed his eyes and raised his head skyward as a security officer approached him from behind with a large cane and started to beat him. Witnesses say Raif was lashed 50 times. Afterwards, he was taken back to prison where he is serving a 10-year sentencefor blogging.
Raif´s next flogging was set to take place today, but Saudi authorities postponed it due to medical advice, his wife said. She expects he will be flogged again next weekand every following weekuntil his sentence of 1,000 lashes is complete.
Raif is officially charged with "adopting liberal thought," "founding a liberal website," and "insulting Islam." He has become the latest symbol of the two-faced policy his country takes towards human rights.
Saudi Arabia is a strong American ally that has enjoyed virtually unconditional support from the United States for decades. President Bush famously held hands with its monarch, King Abdullah, as the two strolled through his Crawford, Texas ranch during the King´s 2005 state visit. President Obama was widely criticized for appearing to bow to Abdullah at a G-20 summit in London.
In the same month that ISIS horrified the world with its brutal beheading of journalist James Foley, Saudi Arabia publicly beheaded 19 people, for crimes ranging from smuggling cannabis to sorcery. Limb amputations for theft are sanctioned by the state religion.
In addition to oil, Saudi Arabia is the world´s leading exporter of Salafism, an ultra-conservative strain of Islam. The country touts itself as the birthplace of the religion of peaceyet underlines the Islamic declaration of "Shahadah" on its flag with a sword. Osama bin Laden was a Saudi citizen, as were 15 of the 19 hijackers on 9/11.
Why does a world outraged by the horrific actions of ISIS and the Taliban turn a blind eye to the way this country treats its own citizens?
The first reason is obvious. It isn´t just our governments. Every time we fill our cars with gas, we all bow to the Saudi king.
The second is more complex.
Online videos of Raif´s flogging show worshipers from the mosque, including young children, running excitedly towards the square to watch the beating. Afterwards, the crowd erupts into cheers and applause, chanting "Allahu Akbar!" (God is Great!) in unison.
This isn´t surprising. The public likely considers Raif guilty of blasphemy and apostasy. A 2013 Pew Research poll found that large numbers in Muslim countries favor the death penalty for leaving Islamincluding 88% of Egyptian and 62% of Pakistani Muslims, as well as majorities in Jordan, Malaysia, Palestine, and Afghanistan.
Of course, these views don´t represent all Muslims. But contrary to what we´re usually told, they aren´t just held by a fringe minority either. Many of these countries don´t have populations willing to rally en masse to support free speech and pluralism the way France did. The change has to first come from within.
Raif has sacrificed a great deal to make this change happen. The world must support him and call Saudi Arabia out on its hypocrisy.
Some time ago, just 50 miles east of where Raif is being held today, another dissident once spoke of change, of challenging the status quo, of radical new ideas that would ultimately transform his society. He was ostracized, persecuted, and eventually driven from his city by those wanting to kill him. He was Mohammed, the Prophet of Islam; his persecutors, the Quraysh tribe of Mecca.
Muslims endeavor to emulate the life of Mohammed. Saudi Arabia has instead chosen to emulate the Quraysh.
This week, Raif spent his 31st birthday imprisoned and wounded. With enough awareness, we can put enough international pressure on the Saudi government to ensure that he spends his next one with his wife and their three beautiful children.
Ali A. Rizvi is a Pakistani-Canadian writer and friend of Raif Badawi. He grew up in Libya, Saudi Arabia, and Pakistan, and is an advocate for secularism and reform in the Muslim world. He is currently writing his first book, "The Atheist Muslim."