Precision medicine is rapidly becoming the focal point of modern medicine. Rather than using a ‘one size fits all’ approach based solely on past treatments for diseases, healthcare workers can now utilize new techniques to personalize medical treatment to the patients. And what’s the best way to personalize your care? Your DNA [3]. DNA is individual to each person, medical techniques can be studied and altered in a way that would take this individuality into account. All of this sounds great, and in many ways it is, but in order to achieve any sort of understanding about how our DNA responds to medicine, genetic testing needs to be conducted.
Genetic research is complicated. DNA is a very accurate personal identifier. Concerns about the ethics of genetic research are copious and nuanced. Researchers need to consider the effects their findings might have on the subjects’ mental health, familial relationships, decision to have children, life insurance, and even employment. On top of that, collecting enough samples from a population, usually a fairly specific population (ex. Women of Native American descent ages twenty to forty), can be expensive, time consuming, or nearly impossible, because of either limited access or distrust of the healthcare system due to a history of inequity and mistreatment in medical institutions.
To help overcome some of these obstacles and allow for precision medicine techniques to develop, the United States started the Precision Medicine Initiative. The goal being to help researchers work towards developing these new medical approaches within the country [1]. One of the major components of this initiative is the creation of a biobank. A biobank is a large collection of samples, in this case DNA samples, that are all stored and labeled together that researchers can be granted access to [4]. Many times patients donating these samples consent for their data to be used in a variety of projects, decreasing the number of consent forms the researcher may have to obtain since they can have access to already consented to samples. In the case of the Precision Medicine Initiative, they collect and store both health and personal history as well as DNA. Instead of having to collect a whole new set on their own, Researchers can be approved and granted access to these samples in order to conduct their research, making the process more efficient.
Of course, in order for this to work, Americans actually need to donate samples. Americans of all ethnicities, classes, and health levels need to be both aware of the initiative. This is in part why The National Institutes of Health gave it a second name: All of Us [2]. The use of the new title in advertising was an attempt to circumvent the fact that many Americans may not know what precision medicine is.
Participation in All of Us requires the donation of a lot of personal information. Such information is necessary for researchers to make accurate claims about their findings. However, due to the nature of this information, a lot of precautions need to be considered to protect the participants' data. One thing All of Us needs to consider is their privacy policies for data collection. Their security system encrypts all data and stores the keys in a separate system. They remove identifying information like name and address in an attempt to keep the samples as anonymous as possible [5]. They also have an access policy designed to ensure only vetted researchers have access to the samples [1]. Applicants go through ethics training, their procedures face review, and they have to sign many conduct contracts. The way they access and share the data is monitored, and the organizations seeking access must also have their own up to code data security system [5]. Even with all the safeguards, patients will still have to fill out a lengthy consent form and ensure they fully understand all the ins and outs of donating a sample.
Precision medicine is soon to be the gold standard for doctors, The Precision Medicine Initiative or All of Us, is extremely beneficial to American researchers in helping them refine techniques. The initiative has even created a database of information about the COVID-19 pandemic [6]. The more Americans know and understand about this biobank and its goals, the bigger it can grow and the more people it can help.
Edited By: Sam Shi
Graphic Designed By: Eugene Cho
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