Issues
This field of DNA sequencing provides a lot of hope for future. Despite its relative newness, it has provided the world with solutions that weren’t possible if we look at our conditions 100 years ago. Despite its aid and benefits, we are faced with certain issues that are inevitable. Some regard the technicalities of the field itself while others regard the ill intentions of people who fail to realize its true importance.
Ethics
Ethical boundaries are hard to define when there is a range of people with varying viewpoints, cultures, and backgrounds who belong who distinct communities. One of the questions raised is if adolescents should be allowed to test for genetic conditions. The condition is that in some diseases, the onset occurs later in life without any specific treatment plans. Since teenagers have developing brains, the concern remains about the psychological effects that can continue to haunt them knowing they are going to be the victim of a major disease in the future. If they are allowed to have the choice to diagnose when they are older, then it leverages some of the stress that is not needed at the time when they are teenagers since the disease occurs later on in life. In opposition, some may argue that teenagers are at a point in life where they are capable of choosing what is fit for themselves and to know what ails them. Along with such scenarios, there are some major questions like how should the project proceed? How should the information gathered be used and interpreted? How can we use the data and information collected? As one can already predict, some questions like how can this information be used raises major concerns because of the exploitation of information in today’s world. People get worried of their genetic information are going to be used against them.
Legality
As we continue to map and sequence for more data interpretation and gathering, there will inevitably be some commercial value adhered to these information. Some legal issues concern the copyright protection of the data covered and the ownership of property.
Medical Implications
With no doubt, DNA Sequencing provides us with a chance to discover diseases and their underlying reasons but without proper guidance and such, there are severe ramifications for this technology.
For the people who do not understand how to read and interpret such data, it can cause them to harbor misunderstandings and falsely interpret a genetic marker to be cause of a disease. Moreover, some people can over estimate their reports and be in emotional stress for something that is not even pertinent. For instance, let’s say someone has the marker HLAB27 which is the cause of ankylosing spondylitis (inflammatory arthritis). Now the chance that a person will actually develop this condition is 0.10 percent. For someone not knowledgeable about this, it can cause severe negative psychological impacts that can bother them for no apparent reason. There are also certain social implications as a result of medical advancements. If we can trace back diseases, there can be raised social prejudice if an ethnic group is the root of it. Even if we are able of interpreting these pieces of information correctly, it shall raise the stress level for physicians who become responsible for administering as well conducting research to help their patients.
Some bigger social consequences include the decisions that people will be able to take when they know about the specificities of the genetic conditions of an individual. The question that comes to mind is should people be allowed to disregard certain people in the society just based on their DNA and not allow them a place in the work environment for example? Other questions regard parents who want to make decisions regarding reproductivity. Should they be allowed to preplan the babies they are going to beget?
Privacy and Confidentiality
One of the greater reasons why our reference genome is at dearth of considerable details of the genetic variations around the world is due to insufficient donors out there. When we do have donors however, it is essential that their information isn’t leaked. One way we can prevent their information from being revealed is by removing the information that a company has about the identification of a donor or by simply anonymizing the sample. There should not be any connections made to the identity of a donor and the information used for sequencing which is publicly shared. Confidentiality should also be conducted both ways, both from the organization using this valuable information and from the donor itself. Another way to ensure that confidentiality is conserved if by providing no incentive for knowing a particular donor. Information should be organized so that it is an accumulation of data from a wide variety of donors so that no single person stands out. There shouldn’t be any disapprovals either since around 99% of our DNAs match.
Donor Selection
Due to the fact that any two individuals can have their DNAs match by 99%, it becomes a problem when attempting to choose from the pool of donors when they shouldn’t be a reason to do so. Human beings also share a history where females were deemed lower than their male counterparts. It only recently has occurred that women have gained rights in several countries but the fact that there are significant salary differences between the two genders denies that most female and males are actually “equal”. Likewise, there are concerns that donors that are males are going to be preferred if sperm DNA is more readily used. Another concern is that people such as caretakers of sequence libraries will be pressured to donate.
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Informed Consent
As the amount of donors for genome sequencing increases, it becomes increasingly important to have a formal consent form because confidentiality and anonymizing the samples alone cannot ensure that safety is guaranteed. Donors must be exposed to the process they are undergoing, the implications of the process and the what makes it different from other types of research. Donors should also know the following:
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Definition of Confidentiality and its greater role in DNA sequencing
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Disability of the donor to later drawback from the process and ask their information back
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Information derived from the donor shall not be shared with his/her family members
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Possibility of certain unknown risks
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Potential risk to the family members of these donors
Since there are several laboratories that might conduct the process of extracting information from a donor, it is important for newer companies to establish collaboration with other experienced companies.
IRB Approval
IRB or the Institutional Review Board is in charge of approving the work of projects concerning several biomedical processes. They keep a check about the protocols involved in the projects involved. For DNA sequencing specifically, it is important that research subjects do not withdraw themselves out of the process once they have consented to it. There are also several libraries involved where there has to definite approval from the IRB otherwise the data collected cannot be used. Laboratories and companies involved in the process of gaining information from a donor also need to show IRB that their donor has not been coerced into giving up their information. In such a case, a third party is involved which ensures that the donor is providing information with their consent and utmost honesty.
Citations: 12.1 - 12.6
Exploring the Depths of Life
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Sequencing
