825 M5 -Discussion Question: A mother with a new set of female twins learns of a


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825 M5 -Discussion Question:
A mother with a new set of female twins learns of a genetic test that can be done to determine if the children are carriers of the gene for breast cancer. She submits the sample to the company, receives the results in 2 weeks, and learns that one twin is at risk while the other is not. The mother takes this information to the infants’ pediatrician and asks for further testing on the child with the increased susceptibility and wants to know if preventative treatment can begin now. The mother also enters this information as patient-generated data which has created several red flags in the electronic record’s decision support system. The clinical staff are concerned since the patient with the risk for breast cancer is only weeks old. Answer the following questions regarding this case:
How would you handle this situation from an ethical perspective?
How will the mother having this knowledge about the infants affect the way they will be treated developmentally, medically, socially, and economically?
Should there be restrictions on the age of individuals receiving genetic testing through companies of questionable reputation?
Module Description:
This module discusses the impact of genomics on electronic health records currently and going forward. After a brief introduction the reader is provided with a history of genomic science. From this we then are provided with information as to how this science supports personalized medicine. Patient involvement in genomics has been increasing particularly with the development and availability of genetic testing through home data collection devices and companies promoting genetic testing capabilities at “reasonable” costs. The regulation of these testing approaches is under FDA scrutiny. Genetic testing through this avenue can increase health care costs and create privacy issues. There needs to be a place to store all of this genetic data. Computers and storage devices have to be expanded or created to protect the data while offer easy access if necessary. The increase in genomics will affect stage 4 of meaningful use. Lastly genomics has created a new set of ethical issues which will impact the integration of this information into electronic health records.
Objectives:
Evaluate the expanding field of genomics
Evaluate the implications for patient engagement, patient portals, and ethics related to HIP and genomics
Learning Materials:
Read Chapter 24
National Human Genome Research Institute
Information about genetic discrimination and Genetic Information Non-Discrimination Act
NIH U.S. National Library of Medicine

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