In 2013, former United States National Security Agency contractor Edward Snowden laid bay that America had become a Dystopia of electronic surveillance and pushed to the forefront the question “does the American Constitution need to be amended to protect privacy rights in the digital age?” Less than a year later Americans are thrust at another crossroad with privacy rights vs. modern scientific medicine and technology by American poet, fiction writer, and journalist Susan Scutti article The Government Owns Your DNA. What Are They Doing With It?
Scutti’s Newsweek article is one of many articles published on genetic testing for newborns in the United States. Genetic testing for neonates dates back to the 1960s when President Kennedy signed …show more content…
The Act not only offered grants to organizations administering screening and health services to newborns, but federal approval for states to conduct the testing and keep the results.
What was noticeably absent in the Act was the matter of informed consent, whether or not these organizations intentionally withholds information from parents is not well defined in the many research on the topic.
What is certain is that before parents can move toward toward greater parental control over screening, more training and education is needed for all involved.
A study conducted by Jeffrey Botkin and colleagues in 2012 revealed that women were split on the question of informed consent. Mothers expressed the need to be informed of the benefits and risk associated with the NBS screening, but few were aware of hospitals sanctioning the saving and storing the results.
Since mothers are not always properly informed about the testing many are shocked to learn that the government owns nor only the results but the dried blood spot (DBS) …show more content…
Every individual has the right to control information is taken about them or their children. It helps stop exploitation and corruption.
Privacy is valued by all and should be protected by government. Corporations are obligated to safeguard the information collected and individuals should be informed when the information is being shared. Preferably before it is shared.
Depositing ones DNA into bio bank cannot be compared to depositing ones money into financial institution. For the account owner has access to the funds and can withdraw the entire at will.
With a bio bank deposit is not always voluntary and access it not available at will. The owner does not receive a monthly statement about recent activities and development. Lending of resources is done without the owners’ knowledge or permission.
The general public understands that it is done for the good of human race, but we are not uninformed people.
Arguably, the average man is not a Pedestrian, scientist or doctor, but we are concerned with our and our family’s
Scutti’s Newsweek article is one of many articles published on genetic testing for newborns in the United States. Genetic testing for neonates dates back to the 1960s when President Kennedy signed …show more content…
The Act not only offered grants to organizations administering screening and health services to newborns, but federal approval for states to conduct the testing and keep the results.
What was noticeably absent in the Act was the matter of informed consent, whether or not these organizations intentionally withholds information from parents is not well defined in the many research on the topic.
What is certain is that before parents can move toward toward greater parental control over screening, more training and education is needed for all involved.
A study conducted by Jeffrey Botkin and colleagues in 2012 revealed that women were split on the question of informed consent. Mothers expressed the need to be informed of the benefits and risk associated with the NBS screening, but few were aware of hospitals sanctioning the saving and storing the results.
Since mothers are not always properly informed about the testing many are shocked to learn that the government owns nor only the results but the dried blood spot (DBS) …show more content…
Every individual has the right to control information is taken about them or their children. It helps stop exploitation and corruption.
Privacy is valued by all and should be protected by government. Corporations are obligated to safeguard the information collected and individuals should be informed when the information is being shared. Preferably before it is shared.
Depositing ones DNA into bio bank cannot be compared to depositing ones money into financial institution. For the account owner has access to the funds and can withdraw the entire at will.
With a bio bank deposit is not always voluntary and access it not available at will. The owner does not receive a monthly statement about recent activities and development. Lending of resources is done without the owners’ knowledge or permission.
The general public understands that it is done for the good of human race, but we are not uninformed people.
Arguably, the average man is not a Pedestrian, scientist or doctor, but we are concerned with our and our family’s