“Even every one that is called by my name: for I have created him for my glory, I have formed him; yea, I have made him.” Isaiah 43:7
Unfortunately, not everyone defines morals the same way and not all scientists look at the same moral compass. A few years ago, I looked at Karen Moxom’s Mind Over Matter Project that is moving beyond implanting chips in people who are paralyzed or missing a limb to implanting chips in addict’s brains to change their behaviors (Moxon, K, Ph.D., Ignacio Saez, Ph.D., and Jochen Ditterich, Ph.D., 2019). What I found disturbed me, and leads us back to moral and ethical questions about how technology should be used.
Karen Moxom speaking about her Mind Over Matter project stated that “Technology in neuroscience will soon let us simply think about something we want our computers to do and watch it instantaneously happen” (Moxon, et al., 2019). As the technology, she is working with becomes more available and safer to use there are also ethical questions to ask about when the technology is appropriate to use and how it should be used in the future.
The technology can change someone’s life that is missing an arm or a leg by decoding algorithms of recorded neuron activity to carry out the patient’s intention to move. There is also a theory that the device will work with memory patients that suffer from Alzheimer’s or be able to change an addict’s decision-making process so that they make better decisions.
Besides deciding how to use the device, there are also cost and inequality concerns because the device will be costly. Another concern is that no one knows what the societal impact of being able to plug thoughts into a computer will be. She did not mention any of those things in her reports.
The definition of “personhood” may need to be changed to make the experiments legally ethical. Technology has taken off so fast that there are not ethical guidelines in place to refer to when ethical questions arise. One idea that some scientists have determined will solve ethical problems involves changing the definition of “personhood”.
Moxon’s study from 2015 intended to establish genuinely causal relationships between neurophysiological activity and behavior shows brain-behavior causality can be achieved by disrupting neural activity with an external intervention and observing the consequent change in behavior. The study shows in neurorobotic BMI, brain-behavior causality is not between the brain and the body, but between the observed neurophysiological activity within the brain and an external device outside the body.
Possibilities are endless and there are numerous studies about how neural coding in the interface can be used to change behavior. They all show how beneficial the technology can be to someone that is missing a limb or suffering from paralysis or Parkinson’s disease but do not say much about the possible adverse effects of using the device.
“Who makes these judgments and how?”
R&D is crossing the line in genetic modifications. Science is always going to seek answers. Scientists are inquisitive beings that will always have more questions about how humans and other things are made and how to improve them. Addictions is a field with little scientific data to base any decisions on. Addicts are often misunderstood and are rarely cared for. Most addicts end up in jail and there are experiments happening that raise ethical questions, but the big question about Moxom’s work is who gets to decide how a person is supposed to think and behave?
To link that back to genetic modifications, who gets to decide what the perfect human is? Will we ever have eyes blue or brown enough? Will humans ever be the desired look? with the desired personality?
Who’s desire? It cannot be a matter for either science or society alone to decide. We as a culture have to decide what we will and will not accept as morally and ethically acceptable. Will we allow the definition of personhood to be changed so that scientist’s work does not legally violate human rights?
When considering genetic data healthcare professionals have to consider what data needs to be collected and how it should be analyzed and used. We also have to be careful with labels because words count and they can hurt. Patient’s lives can easily spiral out of control if they receive the wrong treatment or no treatment at all. Someone may become depressed or financially stressed, and that can lead to more problems with a person’s health.
Low self-esteem about a known genetic characteristic might lead someone to think that they cannot be a good parent or that they can only have children that are physically and mentally disabled. Do we as a society believe that if someone does not look like or think like us that they should not be born?
Adoption and fostering is an alternative that many people with physical disabilities choose to take out of fear that giving birth to a biological child will create a person who’s life will not be successful and appreciated. While many children do need homes and people that they can trust, do the genetically challenged people that want children think that by choosing to adopt and foster that they are receiving the “perfect child” because of the way that the child looks? That adoptive person will end up being disappointed because most orphan children have already suffered unthinkable trauma that looks cannot cover-up.
Jiankui’s work creating genetically enhanced babies was condemned because he deceived vulnerable patients into using a risky, untested procedure with no medical justification (Sample, 2019). No one knows yet how the baby’s lives will turn out to be, but he was arrested and jailed for creating them.
Society needs to be more aware of how our thoughts and actions affect others. Genetic enhancement can be life-saving such as with treating memory problems before a patient develops Alzheimer’s, or to cure blood disorders, cancer, blindness, AIDS, cystic fibrosis, and other diseases. Genetic screening can be used by doctors to detects pre-existing genetic characteristics. The goal for most medical scientists is to create a healthier society.
Gene editing can be done to prevent diseases, cure diseases, and to change or improve physical appearance, metabolism, and physical capabilities. Mental faculties such as memory and intelligence can also be genetically enhanced. Foods can be genetically modified and created!
Ethical guidelines that are in place, but that have to be thought about again and again include: Beneficence is a foundational moral principle that means that doctors have a moral obligation to make decisions based on what is best for the client and to set their own needs aside to focus on the needs of the clients throughout the relationship. Fidelity is a moral principle that pertains to the importance of building relationships based on trusts. On agreeing to participate in a research project, participants are entrusting themselves to the researcher who has an obligation to protect each participant as much as possible from any harm as a result of participating in their research.
Most genetic enhancements probably are for the good of the patient, but then there are other processes and procedures that may cause more harm. The entire mind, body, and spirit of each patient would have to be evaluated to assess how appropriate a genetic enhancement will be. In doing so I hope that doctors will remember that we are all made by God and in his image.
Minding Hearts is building advocacy and peer support groups in each state. The groups are created to raise awareness, educate, and advocate for those that might not otherwise be heard. We are here for encouragement, education, and support. We cannot give legal advice, but we can try and direct you in the right direction with your case. Links to legal services are listed with their states. Please share and let’s grow our groups. We are here to support families and develop resources that maintain family integrity. We look forward to your support. If you would rather become active by donating, then visit the donation page.
Moxon, Karen, Guglielmo Foffani, (Brain-Machine Interfaces beyond Neuroprosthetics, School of Biomedical Engineering, Science and Health Systems, Retrieved From,), http://dx.doi.org/10.1016/j.neuron.2015.03.036
Moxon, K, Ph.D., Ignacio Saez, Ph.D., and Jochen Ditterich, Ph.D., (2019), Mind Over Matter: Cognitive Neuroengineering, The Dana Foundation, Retrieved From, http://dana.org/Cerebrum/2019/Mind_Over_Matter_Cognitive_Neuroengineering/
Sample, Ian, (2019), Chinese scientist who edited babies’ genes jailed for three years, The Guardian, Retrieved from, https://www.theguardian.com/world/2019/dec/30/gene-editing-chinese-scientist-he-jiankui-jailed-three-years