Nia Jagroop/ ELSI Capstone Essay/ May 2017
The human experience is very complex and our lives are undoubtedly shaped by our environmental input, which may come in the form of knowledge, in this case, Whole Genome Sequencing (WGS) for newborns. As individuals, we have a right to filter the informational input received even from the time of birth from the health care establishment. Our genetic makeup, while profound and revealing, may be so dramatically life altering that some may choose to live without knowing it at all. At this stage, WGS interpretation is still being explored and represents an area of science that the public may be wary about. This leads to the idea of WGS for newborns. Should states adopt universal WGS in addition to standard …show more content…
Firstly, most of it has not been decoded so consulting based upon the entire sequence should be done with extreme caution or at this point, not at all. Even short-term conclusions can be dangerous because they must be tried, tested and built upon to hold creditability, as does any other scientific conclusion. Time and diligence with the scientific process will give us answers to what newly discovered genes are and how they are expressed. Only when the data become clinically significant and has a high degree level of confidence should we launch any form of WGS for newborns.
A good way to introduce using WGS is to screen for primary conditions but still give the option to access the raw data with consent.1 The limited release of information is similar to what is currently in place but with a larger source of data to draw from. What about the remainder of information? Considering that the source is the newborn, ethically speaking, the parent’s should have the right to have the WGS of the child, if they wish. This way, as new discoveries about the human genome are released, they can do what they choose with the information they have, or they could choose to not have the data it at
The human experience is very complex and our lives are undoubtedly shaped by our environmental input, which may come in the form of knowledge, in this case, Whole Genome Sequencing (WGS) for newborns. As individuals, we have a right to filter the informational input received even from the time of birth from the health care establishment. Our genetic makeup, while profound and revealing, may be so dramatically life altering that some may choose to live without knowing it at all. At this stage, WGS interpretation is still being explored and represents an area of science that the public may be wary about. This leads to the idea of WGS for newborns. Should states adopt universal WGS in addition to standard …show more content…
Firstly, most of it has not been decoded so consulting based upon the entire sequence should be done with extreme caution or at this point, not at all. Even short-term conclusions can be dangerous because they must be tried, tested and built upon to hold creditability, as does any other scientific conclusion. Time and diligence with the scientific process will give us answers to what newly discovered genes are and how they are expressed. Only when the data become clinically significant and has a high degree level of confidence should we launch any form of WGS for newborns.
A good way to introduce using WGS is to screen for primary conditions but still give the option to access the raw data with consent.1 The limited release of information is similar to what is currently in place but with a larger source of data to draw from. What about the remainder of information? Considering that the source is the newborn, ethically speaking, the parent’s should have the right to have the WGS of the child, if they wish. This way, as new discoveries about the human genome are released, they can do what they choose with the information they have, or they could choose to not have the data it at