the overall quality of life. However, with any new medical discovery, traditional ethical issues can be brought to light involving moral issues that conflict with autonomy as well as confidentiality rights. With the innovation of personalized medicine, new ethical scholarly stances can also be taken regarding the encouragement of sharing of private biological information in order to benefit others, an idea referred to as reciprocity, a stark contrast from expected patient confidentiality. The overarching ethical issues involving confidentiality and finances will be taken into account when regarding the newer ethical stances on personal information sharing. This investigation will be achieved by analyzing the genetic DNA and health risks testing company, 23andMe, in order to further implement the human need for the privacy of the individual and an increased in autonomy to overall positively impact the quality of life.
The Human Genome Project, concluded in 2003, has paved the way for medical experts to analyze human DNA and determine which genes can be biomarkers for potential diseases through extensive gene mapping. From the Human Genome Project it was determined that there around 20,500 human genes along with the identification of their varying locations on the chromosomes and the structure and characteristic of the human DNA, ultimately determining the sequence of the human genome (Uddhav). The conclusion of this project opened the market for treatment by personalized medicine because the research revealed that the human nucleotide sequence could be identical in every individual and should be the same in every individual. This means that human disease could be the result of a change or mutation in a single human nucleotide (An Overview of the Human Genome Project).
The process of providing personalized medicine allows health care professional to identify genes that carry disease and therefore allowing them to potentially be notified prior to development by taking the patient’s DNA and running it through sequencing algorithms. These sequencing algorithms allow pharmaceutical drugs to go from being a generalized treatment to all potential consumers to being targeted to the individual’s direct genes by determining the correct pharmaceutical treatment. Personalized medicine is implemented because tricky diseases like cancer are just not a single disease, but many different diseases, medical attention can be given to that specific cancer based on how it is attacking that specific patient in order to be effectively treated. Prescribing specifically to the patient allows the decrease chance of adverse effects and an increased chance of overall effectiveness based on a number of genetic biomarkers and family medical history of the patient.
Like any other new medical phenomenon, ethical rights arise regarding the risk of patient information care and the moral rights of consumers being exposed to the new ways of medicine. An issue that arises when receiving personalized medical treatment is how patients can afford the treatments and various DNA testing. Janice Poulsen, a 71 year old lung cancer patient, told US Health News, “Cancer isn’t cheap...If you put in a radon mitigation system, it’s about $1,500.” (Esposito). In a perfect world personalize medicine would without a doubt solve all the discrepancies in receiving medical treatment; however, this is not the case. The added costs to these new treatments may stem from the companies that developed the treatment wanting to subsidize the price of their research and development (Esposito). This could make these medical treatments only available to those consumers wealthy enough to afford it, making personalized medicine completely unaffordable to the average middle class citizen but more reasonable to wealthier individuals. The choice may come down to getting the proper medical attention needed to survive or settling for the generic affordable medication that is given to all individuals with the same symptoms or illness. The increased price tag that comes with personalized medicine raises the question of whether or not implementing personalized medical treatments into society is cost-effective if it is only benefiting a small portion of, presumably wealthy, people. Another concern that arises is whether insurance company will require genetic DNA testing for influence in determining the coverage they will provide when writing insurance policies because of their predisposition of medical costs. Because every medical issue demands different monterey requirements, insurance companies may be tempted to adjust the price of their policies on a case by case basis. This alludes to a threat in a patient's autonomy and whether the patient's right to autonomy is more important than the insurance company’s right to maintain an efficient business. This issue can also be relevant in job searching. If employers had access to potential employee's health records, discrimination can occur based on the potential health risks present in that individual and whether these risks will impact the future work of the potential employee. However, the growth of knowledge in the medical technology industry, such as personalized medicine, will evidently lead to better treatments with less negative health costs. The improvement in personalized medicine can allow some of the already diagnosed diseases to be treated with better therapies and with better accuracy. In turn, the improvement of medical research can decrease the predicted discrimination in employment and insurance agencies by ensuring a better outcome from medical treatments.
While being a threat to autonomy, insurance companies’ instistance to their clients genetic information may also be a threat to patient confidentiality.
Ruth Chadwick, the author of “Drug Discovery Today: Therapeutic Strategies”, revealed her concerns for the personalized medicine movement, “The move towards personalized medicine may disadvantage some patients in some social contexts, by shifting the allocation of resources in the health care system. Risks also surround the increasing accumulation of health data that goes hand in hand with personalized medicine” (Chadwick 171). Chadwick refers to the collection of personal DNA test information, “accumulation of healthcare data” as a risk; however, with the increased informational knowledge brought in by personalized medicine testing, cancer or other incurable diseases could benefit from an increased database of information. The risks mentioned by Chadwick may elude to an ethical argument for the increased concerns as personalized medicine comes to mainstream healthcare. Ideally, the increase in genetic testing among individuals through the implementation of personalized medicine would bring in massive amounts of information regarding the precursors for diseases and cancer allowing medical attention to become more accurate. However the use of the extensive personal knowledge could conflict with the patients rights to confidentiality through the use of electronic health records, which are susceptible to hacking and breaches (Chadwick). Other issues regarding confidentiality about the patient’s genetic information can be seen in inter family sharing. Because a patient's genetic makeup carries relation to other family members regarding hereditary disease, the issue then lies with whether or not those family member should be informed of their possibility to develop a life altering disease. Allowing personal genetic information to be shared between families may also pave the way for other institutions to find a way to
collect your confidential medical information. This can connect back to the previously mentioned example of insurance companies who may find your medical information useful when conducting a health insurance policy but also for future employers who could make hiring decisions based on medical history and future possibilities. Even though sharing medical information is seen as an over step of confidential boundaries, personal genomic and biotechnology companies have already been doing it for years. 23andMe is a global DNA testing company that uses the consumers saliva to test for DNA ancestry as well as genetic health risk testing, which includes tests for around 10 disease, since 2006. Some of the diseases that 23andMe currently tests for are parkinson disease, late-onset Alzheimer's disease, and Celiac disease as well as multiple deficiencies. When participating in a 23andMe DNA test you are given the option to allow or not allow researchers to use your genetic information to further their studies by creating an genetic health risk information bank by selling customer’s information to researching companies (23andMe.com). Sharing genetic information can be a perspective tool used to further the medical industry’s discovery on improving the quality of life by allowing the company to gather personal information. Giving this company permission to store, distribute, and sell individual’s personal DNA information can lead to more accuracy within the practice of personalized medicine by using the genetic biomarkers and the disease they connect to. This can be attributed to the increased bank of knowledge that researcher will have on not only personal genetics but hereditary based genetics. On 23andMe’s website, the issue of privacy is addressed by the statement, “Your privacy and the security of your information is 23andMe's highest priority. Our goal is to be transparent about our policies and practices related to data use. We want to ensure your information is protected by physical, technical and administrative security measures.” (23andMe.com). Because this is the only statement regarding any sort of privacy or confidentiality found on the website, customers who a skeptical of the protection of their private information may be harder to convince. A writer for scieniticiamerican.com, Charles Seifie, defines his skepticism about the company's main goal, “The Personal Genome Service isn’t primarily intended to be a medical device. It is a mechanism meant to be a front end for a massive information-gathering operation against an unwitting public” (Seifie). Seifie brings to light valid concerns when regarding the collection of personal DNA information. As more individuals participate in a DNA testing service, such as 23andMe, their most personal information can be gathered and sold to researching biobank companies, allowing these companies to have massively growing information banks. Seifies’ ideas can lead to the question of the unclear true intentions of involved with the massive gathering of information done by these companies. A question regarding the researching companies usage and storage of the massive amounts of information stored. This question is not touched on by 23andMe, no insight as to what the researching companies do with your information is revealed by the company, therefore there is still risk in checking in checking the box in agreement.