ENCODE Ethics Overview
Because of the rapid expansion of ENCODE, the medical field is unable to keep up with the increased knowledge required to administer genetic tests and warn patients of potential genetic diseases. In a recent survey reported by Seton Hall University, 78 percent of medical student graduates recieved inadequate instruction on how to deal with genetical tests and information. Additionally, 80 percent of patients reported that they were comfortable with their primary-care physicians giving genetic tests and divulging test results. This often results in inadquate release of information or improper genetic tests adminstered to patients which could result in malpractice lawsuits and other sorts of legal action taken against the healthcare professional. In addition, because of ENCODE, the country and its citizens have higher expectations for healthcare providers to properly divulge and give genetic test even though they may not be qualified to do so. Certain states have also required that Doctors must notify the patient and other third parties directly related to the patient of any potential genetic diseases identified by a genetic test. Doctors must also give a genetic test if a certain disease is suspected in the family. In a recent court case, a doctor had treated a patient's father 35 years ago and the patient was suing the doctor for not divulging information of her father's genetic illness, which she now had. The doctor lost the case because the court ruled that it was within the line of duty of the doctor to divulge such information in order for the third-party patient to begin treatment. Such cases a difficult to handle and difficult for the health-care provider because informed consent laws and what constitutes as breach of confedentiality has been blurred. It is debatable whether or not the doctor has the right to breach confedentiality and notify family members or if he is legally requried to notify family members of possible genetic illnesses that the family is susceptible to. Finally, ENCODE has caused a major reduction in the price to sequence a genome. Currently the price stands at around 1,000 usd to sequence a genome. This allows such services to be used by many consumers including doctors, healthcare providers, employers, citizens, government, etc. since sequencing has become so affordable. This presents a major issue as employers may be able to discriminate using genetic data. The ENCODE project itself has helped to identify transcription factors related to 17 major diseases including Crohn's Disease. ENCODE also has the possibility of discovering methylation sites and, CCTF protein binding sites, and regulatory genes that could point toward behavior tendencies, personalities, and suceptibility to a variety of diseases like ALS, ADHD, Huntington's, Diabetes, etc.
