There are at least four elements which exist in organizations that make ethical behavior conducive within an organization. The four elements necessary to quantify an organization’s ethics are:
1) Written code of ethics and standards
2) Ethics training to executives, managers, and employees
3) Availability for advice on ethical situations (i.e. advice lines or offices)
4) Systems for confidential reporting.
Good leaders strive to create a better and more ethical organization. Restoring an ethical climate in organization is critical, as it is a key component in solving the many other organizational development and ethical behavior issues facing the organization.
From debates over drug-testing to analyses of scandals on Wall Street, attention to ethics in business organizations has never been greater. Yet, much of the attention given to ethics in the workplace overlooks some critical aspects of organizational ethics. When talking about ethics in organizations, one has to be aware that there are two ways of approaching the subject–the “individualistic approach” and what might be called the “communal approach.” Each approach incorporates a different view of moral responsibility and a different view of the kinds of ethical principles that should be used to resolve ethical problems.
More often than not, discussions about ethics in organizations reflect only the “individualistic approach” to moral responsibility. According to this approach, every person in an organization is morally responsible for his or her own behavior, and any efforts to change that behavior should focus on the individual. But there is another way of understanding responsibility, which is reflected in the “communal approach.” Here individuals are viewed not in isolation, but as members of communities that are partially responsible for the behavior of their members. So, to understand and change an individual’s behavior we need to understand and try to change the communities to which they belong.
Any adequate understanding of, and effective solutions to, ethical problems arising in organizations requires that we take both approaches into account. Recent changes in the way we approach the “problem of the alcoholic” serve as a good example of the interdependence of individual and communal approaches to problems. Not so long ago, many people viewed an alcoholic as an individual with problems. Treatment focused on helping the individual deal with his or her problem. Today, however, the alcoholic is often seen as part of a dysfunctional family system that reinforces alcoholic behavior.
In many cases, the behavior of the alcoholic requires that we change the entire family situation. These two approaches also lead to different ways of evaluating moral behavior. Once again, most discussions of ethical issues in the workplace take an individualistic approach. They focus on promoting the good of the individual: individual rights, such as the right to freedom of expression or the right to privacy, are held paramount. The communal approach, on the other hand, would have us focus on the common good, enjoining us to consider ways in which actions or policies promote or prohibit social justice or ways in which they bring harm or benefits to the entire community. When we draw upon the insights of both approaches we increase our understanding of the ethical values at stake in moral issues and increase the options available to us for resolving these issues. The debate over drug-testing, for example, is often confined to an approach that focuses on individual rights.
Advocates of drug-testing argue that every employer has a right to run the workplace as he or she so chooses, while opponents of drug-testing argue that drug-testing violates the employee’s right to privacy and due process. By ignoring the communal aspects of drug abuse, both sides neglect some possible solutions to the problem of drug use in the workplace. The communal approach would ask us to consider questions which look beyond the interests of the individual to the interests of the community: What kinds of drug policies will promote the good of the community, the good of both the employer and the employee? Using the two approaches to dealing with ethical problems in organizations will often result in a greater understanding of these problems. There are times, however, when our willingness to consider both the good of the individual and the good of the community leaves us in a dilemma, and we are forced to choose between competing moral claims.
Affirmative Action Programs, for example, bring concerns over individual justice into conflict with concerns over social justice. When women and minorities are given preferential treatment over white males, individuals are not treated equally, which is unjust. On the other hand, when we consider what these programs are trying to accomplish, a more just society, and also acknowledge that minorities and women continue to be shut out of positions, (especially in top management), then these programs are, in fact, indispensable for achieving social justice. Dropping preferential treatment programs might put an end to the injustice of treating individuals unequally, but to do so would maintain an unjust society.
In this case, many argue that a communal approach, which stresses the common good, should take moral priority over the good of the individual. When facing such dilemmas, the weights we assign to certain values will sometimes lead us to choose those organizational policies or actions that will promote the common good. At other times, our values will lead us to choose those policies or actions that will protect the interests and rights of the individual. But perhaps the greatest challenge in discussions of ethics in organizations is to find ways in which organizations can be designed to promote the interests of both.
Organizational ethics are the principals and standards by which businesses operate, according to Reference for Business. They are best demonstrated through acts of fairness, compassion, integrity, honor and responsibility. The key for business owners and executives is ensuring that all employees understand these ethics. One of the best ways to communicate organizational ethics is by training employees on company standards. Uniform Treatment
One example of organizational ethics is the uniform treatment of all employees. Small business owners should treat all employees with the same respect, regardless of their race, religion, cultures or lifestyles. Everyone should also have equal chances for promotions. One way to promote uniform treatment in organizations is through sensitivity training. Some companies hold one-day seminars on various discrimination issues. They then invite outside experts in to discuss these topics. Similarly, small company managers must also avoid favoring one employee over others. This practice may also lead to lawsuits from disgruntled employees. It is also counterproductive. Social Responsibility
Small companies also have an obligation to protect the community. For example, the owner of a small chemical company needs to communicate certain dangers to the community when explosions or other disasters occur. The owner must also maintain certain safety standards for protecting nearby residents from leaks that affect the water or air quality. There are state and federal laws that protect people from unethical environmental practices. Business owners who violate these laws may face stiff penalties. They may also be shut down.
Business owners must run clean operations with respect to finances, investing and expanding their companies. For example, organizations must not bribe state legislators for tax credits or special privileges. Insider trading is also prohibited. Insider trading is when managers or executives illegally apprise investors or outside parties of privileged information affecting publicly traded stocks, according to the Securities and Exchange Commission. The information helps some investors achieve greater returns on their investments at the expense of others. Executives in small companies must strive to help all shareholders earn better returns on their money. They must also avoid collusive arrangements with other companies to deliberately harm other competitors.
A small company’s organizational ethics can also include taking care of employees with mental illnesses or substance abuse problems, such as drug and alcohol dependency. Ethical business owners help their employees overcome these types of problems when possible. They often put them through employee advisor programs, which involves getting them the treatment they need. Employees may have issues that lead to these types of problems. Therefore, they deserve a chance to explain their situations and get the help they need.
Perhaps the most practical approach is to view ethics as a catalyst that causes managers to take socially responsible actions. The movement toward including ethics as a critical part of management education began in the 1970s, grew significantly in the 1980s, and is expected to continue growing. Hence, business ethics is a critical component of business leadership. Ethics can be defined as our concern for good behavior. We feel an obligation to consider not only our own personal well-being but also that of other human beings. This is similar to the precept of the Golden Rule: Do unto others as you would have them do unto you. In business, ethics can be defined as the ability and willingness to reflect on values in the course of the organization’s decision-making process, to determine how values and decisions affect the various stakeholder groups, and to establish how managers can use these precepts in day-to-day company operations.
Ethical business leaders strive for fairness and justice within the confines of sound management practices. Many people ask why ethics is such a vital component of management practice. It has been said that it makes good business sense for managers to be ethical. Without being ethical, companies cannot be competitive at either the national or international levels. While ethical management practices may not necessarily be linked to specific indicators of financial profitability, there is no inevitable conflict between ethical practices and a firm’s emphasis on making a profit; our system of competition presumes underlying values of truthfulness and fair dealing. The employment of ethical business practices can enhance overall corporate health in three important areas. The first area is productivity.
The employees of a corporation are stakeholders who are affected by management practices. When management considers ethics in its actions toward stakeholders, employees can be positively affected. For example, a corporation may decide that business ethics requires a special effort to ensure the health and welfare of employees. Many corporations have established employee advisory programs (EAPs), to help employees with family, work, financial, or legal problems, or with mental illness or chemical dependency. These programs can be a source of enhanced productivity for a corporation. A second area in which ethical management practices can enhance corporate health is by positively affecting “outside” stakeholders, such as suppliers and customers. A positive public image can attract customers.
For example, a manufacturer of baby products carefully guards its public image as a company that puts customer health and well-being ahead of corporate profits, as exemplified in its code of ethics. The third area in which ethical management practices can enhance corporate health is in minimizing regulation from government agencies. Where companies are believed to be acting unethically, the public is more likely to put pressure on legislators and other government officials to regulate those businesses or to enforce existing regulations. For example, in 1990 hearings were held on the rise in gasoline and home heating oil prices following Iraq’s invasion of Kuwait, in part due to the public perception that oil companies were not behaving ethically.
ACODE OF ETHICS
A code of ethics is a formal statement that acts as a guide for how people within a particular organization should act and make decisions in an ethical fashion. Ninety percent of the Fortune 500 firms, and almost half of all other firms, have ethical codes. Codes of ethics commonly address issues such as conflict of interest, behavior toward competitors, privacy of information, gift giving, and making and receiving political contributions. According to a recent survey, the development and distribution of a code of ethics within an organization is perceived as an effective and efficient means of encouraging ethical practices within organizations.
Business leaders cannot assume, however, that merely because they have developed and distributed a code of ethics an organization’s members have all the guidelines needed to determine what is ethical and will act accordingly. There is no way that all situations that involve decision making in an organization can be addressed in a code. Codes of ethics must be monitored continually to determine whether they are comprehensive and usable guidelines for making ethical business decisions. Managers should view codes of ethics as tools that must be evaluated and refined in order to more effectively encourage ethical practices.
CREATING AN ETHICAL WORKPLACE
Business managers in most organizations commonly strive to encourage ethical practices not only to ensure moral conduct, but also to gain whatever business advantage there may be in having potential consumers and employees regard the company as ethical. Creating, distributing, and continually improving a company’s code of ethics is one usual step managers can take to establish an ethical workplace. Another step managers can take is to create a special office or department with the responsibility of ensuring ethical practices within the organization. For example, management at a major supplier of missile systems and aircraft components has established a corporate ethics office. This ethics office is a tangible sign to all employees that management is serious about encouraging ethical practices within the company. Another way to promote ethics in the workplace is to provide the work force with appropriate training. Several companies conduct training programs aimed at encouraging ethical practices within their organizations. Such pro grams do not attempt to teach what is moral or ethical but, rather, to give business managers criteria they can use to help determine how ethical a certain action might be.
Managers then can feel confident that a potential action will be considered ethical by the general public if it is consistent with one or more of the following standards: 1. The Golden Rule: Act in a way you would want others to act toward you. 2. The utilitarian principle: Act in a way that results in the greatest good for the greatest number. 3. Kant’s categorical imperative: Act in such a way that the action taken under the circumstances could be a universal law, or rule, of behavior. 4. The professional ethic: Take actions that would be viewed as proper by a disinterested panel of professional peers. 5. The TV test: Always ask, “Would I feel comfortable explaining to a national TV audience why I took this action?” 6. The legal test: Ask whether the proposed action or decision is legal.
Established laws are generally considered minimum standards for ethics. 7. The four-way test: Ask whether you can answer “yes” to the following questions as they relate to the decision: Is the decision truthful? Is it fair to all concerned? Will it build goodwill and better friendships? Will it be beneficial to all concerned? Finally, managers can take responsibility for creating and sustaining conditions in which people are likely to behave ethically and for minimizing conditions in which people might be tempted to behave unethically. Two practices that commonly inspire unethical behavior in organizations are giving unusually high rewards for good performance and unusually severe punishments for poor performance. By eliminating such factors, managers can reduce much of the pressure that people feel to perform unethically. They can also promote the social responsibility of the organization.
The term social responsibility means different things to different people. Generally, corporate social responsibility is the obligation to take action that protects and improves the welfare of society as a whole as well as organizational interests. According to the concept of corporate social responsibility, a manager must strive to achieve both organizational and societal goals. Current perspectives regarding the fundamentals of social responsibility of businesses are listed and discussed through (1) the Davis model of corporate social responsibility, (2) areas of corporate social responsibility, and (3) varying opinions on social responsibility. A model of corporate social responsibility that was developed by Keith Davis provides five propositions that describe why and how businesses should adhere to the obligation to take action that protects and improves the welfare of society and the organization: * Proposition 1: Social responsibility arises from social power. * Proposition 2: Business shall operate as an open system, with open receipt of inputs from society and open disclosure of its operation to the public.
* Proposition 3: The social costs and benefits of an activity, product, or service shall be thoroughly calculated and considered in deciding whether to proceed with it. * Proposition 4: Social costs related to each activity, product, or service shall be passed on to the consumer. * Proposition 5: Business institutions, as citizens, have the responsibility to become involved in certain social problems that are outside their normal areas of operation. The areas in which business can become involved to protect and improve the welfare of society are numerous and diverse. Some of the most publicized of these areas are urban affairs, consumer affairs, environmental affairs, and employment practices. Although numerous businesses are involved in socially responsible activities, much controversy persists about whether such involvement is necessary or appropriate. There are several arguments for and against businesses performing socially responsible activities. The best-known argument supporting such activities by business is that because business is a subset of and exerts a significant impact on society, it has the responsibility to help improve society.
Since society asks no more and no less of any of its members, why should business be exempt from such responsibility? Additionally, profitability and growth go hand in hand with responsible treatment of employees. customers, and the community. However, studies have not indicated any clear relationship between corporate social responsibility and profitability. One of the better known arguments against such activities is advanced by the distinguished economist Milton Friedman. Friedman argues that making business managers simultaneously responsible to business owners for reaching profit objectives and to society for enhancing societal welfare represents a conflict of interest that has the potential to cause the demise of business.
According to Friedman, this demise almost certainly will occur if business continually is forced to perform socially responsible behavior that is in direct conflict with private organizational objectives. He also argues that to require business managers to pursue socially responsible objectives may be unethical, since it requires managers to spend money that really belongs to other individuals. Regardless of which argument or combination of arguments particular managers might support, they generally should make a concerted effort to perform all legally required socially responsible activities, consider voluntarily performing socially responsible activities beyond those legally required, and inform all relevant individuals of the extent to which their organization will become involved in performing social responsibility activities. Federal law requires that businesses perform certain socially responsible activities. In fact, several government agencies have been established and are maintained to develop such business-related legislation and to make sure the laws are followed.
The Environmental Protection Agency does indeed have the authority to require businesses to adhere to certain socially responsible environmental standards. Adherence to legislated social responsibilities represents the minimum standard of social responsibility performance that business leaders must achieve. Managers must ask themselves, however, how far beyond the minimum they should attempt to go difficult and complicated question that entails assessing the positive and negative outcomes of performing socially responsible activities. Only those activities that contribute to the business’s success while contributing to the welfare of society should be undertaken. Social Responsiveness. Social responsiveness is the degree of effectiveness and efficiency an organization displays in pursuing its social responsibilities. The greater the degree of effectiveness and efficiency, the more socially responsive the organization is said to be.
The socially responsive organization that is both effective and efficient meets its social responsibilities without wasting organizational resources in the process. Determining exactly which social responsibilities an organization should pursue and then deciding how to pursue them are perhaps the two most critical decision-making aspects of maintaining a high level of social responsiveness within an organization. That is, managers must decide whether their organization should undertake the activities on its own or acquire the help of outsiders with more expertise in the area. In addition to decision making, various approaches to meeting social obligations are another determinant of an organization’s level of social responsiveness.
A desirable and socially responsive approach to meeting social obligations involves the following: * Incorporating social goals into the annual planning process * Seeking comparative industry norms for social programs * Presenting reports to organization members, the board of directors, and stockholders on progress in social responsibility * Experimenting with different approaches for measuring social performance * Attempting to measure the cost of social programs as well as the return on social program investments S. Prakash Sethi presents three management approaches to meeting social obligations: (1) the social obligation approach, (2) the social responsibility approach, and (3) the social responsiveness approach. Each of Sethi’s three approaches contains behavior that reflects a somewhat different attitude with regard to businesses performing social responsible activities. The social obligation approach, for example, considers business as having primarily economic purposes and confines social responsibility activity mainly to conformance to existing laws.
The socially responsible approach sees business as having both economic and societal goals. The social responsiveness approach considers business as having both societal and economic goals as well as the obligation to anticipate upcoming social problems and to work actively to prevent their appearance. Organizations characterized by attitudes and behaviors consistent with the social responsiveness approach generally are more socially responsive than organizations characterized by attitudes and behaviors consistent with either the social responsibility approach or the social obligation approach. Also, organizations characterized by the social responsibility approach generally achieve higher levels of social responsiveness than organizations characterized by the social obligation approach. As one moves from the social obligation approach to the social responsiveness approach, management becomes more proactive. Proactive managers will do what is prudent from a business viewpoint to reduce liabilities whether an action is required by law or not. Areas of Measurement.
To be consistent, measurements to gauge organizational progress in reaching socially responsible objectives can be performed. The specific areas in which individual companies actually take such measurements vary, of course, depending on the specific objectives of the companies. All companies, however, probably should take such measurements in at least the following four major areas: 1. Economic function: This measurement gives some indication of the economic contribution the organization is making to society. 2. Quality-of-life: The measurement of quality of life should focus on whether the organization is improving or degrading the general quality of life in society. 3. Social investment: The measurement of social investment deals with the degree to which the organization is investing both money and human resources to solve community social problems.
4. Problem-solving: The measurement of problem solving should focus on the degree to which the organization deals with social problems. The Social Audit: A Progress Report. A social audit is the process of taking measurements of social responsibility to assess organizational performance in this area. The basic steps in conducting a social audit are monitoring, measuring, and appraising all aspects of an organization’s socially responsible performance. Probably no two organizations conduct and present the results of a social audit in exactly the same way. The social audit is the process of measuring the socially responsible activities of an organization. It monitors, measures, and appraises socially responsible performance. Managers in today’s business world increasingly need to be aware of two separate but interrelated concernsusiness ethics and social responsibility.
BACKGROUND & DEFINITIONS
The past decade has seen an explosion of interest among college faculty in the teaching methods variously grouped under the terms ‘active learning’ and ‘cooperative learning’. However, even with this interest, there remains much misunderstanding of and mistrust of the pedagogical “movement” behind the words. The majority of all college faculty still teach their classes in the traditional lecture mode. Some of the criticism and hesitation seems to originate in the idea that techniques of active and cooperative learning are genuine alternatives to, rather than enhancements of, professors’ lectures. We provide below a survey of a wide variety of active learning techniques which can be used to supplement rather than replace lectures. We are not advocating complete abandonment of lecturing, as both of us still lecture about half of the class period. The lecture is a very efficient way to present information but use of the lecture as the only mode of instruction presents problems for both the instructor and the students.
There is a large amount of research attesting to the benefits of active learning. “Active Learning” is, in short, anything that students do in a classroom other than merely passively listening to an instructor’s lecture. This includes everything from listening practices which help the students to absorb what they hear, to short writing exercises in which students react to lecture material, to complex group exercises in which students apply course material to “real life” situations and/or to new problems. The term “cooperative learning” covers the subset of active learning activities which students do as groups of three or more, rather than alone or in pairs; generally, cooperative learning techniques employ more formally structured groups of students assigned complex tasks, such as multiple-step exercises, research projects, or presentations.
Cooperative learning is to be distinguished from another now well-defined term of art, “collaborative learning”, which refers to those classroom strategies which have the instructor and the students placed on an equal footing working together in, for example, designing assignments, choosing texts, and presenting material to the class. Clearly, collaborative learning is a more radical departure from tradition than merely utilizing techniques aimed at enhancing student retention of material presented by the instructor; we will limit our examples to the “less radical” active and cooperative learning techniques. “Techniques of active learning”, then, are those activities which an instructor incorporates into the classroom to foster active learning.
TECHNIQUES OF ACTIVE LEARNING
Exercises for Individual Students
Because these techniques are aimed at individual students, they can very easily be used without interrupting the flow of the class. These exercises are particularly useful in providing the instructor with feedback concerning student understanding and retention of material. Some (numbers 3 and 4, in particular) are especially designed to encourage students’ exploration of their own attitudes and values. Many (especially numbers 4 – 6) are designed to increase retention of material presented in lectures and texts. 1. The “One Minute Paper” – This is a highly effective technique for checking student progress, both in understanding the material and in reacting to course material.
Ask students to take out a blank sheet of paper, pose a question (either specific or open-ended), and give them one (or perhaps two – but not many more) minute(s) to respond. Some sample questions include: “How does John Hospers define “free will”?”, “What is “scientific realism”?”, “What is the activation energy for a chemical reaction?”, “What is the difference between replication and transcription?”, and so on. Another good use of the minute paper is to ask questions like “What was the main point of today’s class material?” This tells you whether or not the students are viewing the material in the way you envisioned.
2. Muddiest (or Clearest) Point – This is a variation on the one-minute paper, though you may wish to give students a slightly longer time period to answer the question. Here you ask (at the end of a class period, or at a natural break in the presentation), “What was the “muddiest point” in today’s lecture?” or, perhaps, you might be more specific, asking, for example: “What (if anything) do you find unclear about the concept of ‘personal identity’ (‘inertia’, ‘natural selection’, etc.)?”.
Questions and Answers
While most of us use questions as a way of prodding students and instantly testing comprehension, there are simple ways of tweaking our questioning techniques which increase student involvement and comprehension. Though some of the techniques listed here are “obvious”, we will proceed on the principle that the obvious sometimes bears repeating (a useful pedagogical principle, to be sure!).
Debates – Actually a variation of #27, formal debates provide an efficient structure for class presentations when the subject matter easily divides into opposing views or ‘Pro’/‘Con’ considerations. Students are assigned to debate teams, given a position to defend, and then asked to present arguments in support of their position on the presentation day. The opposing team should be given an opportunity to rebut the argument(s) and, time permitting, the original presenters asked to respond to the rebuttal. This format is particularly useful in developing argumentation skills (in addition to teaching content).
ABOUT THIS DEBATE
DNA carries a person’s identity. It also carries a vast amount of other information about that person’s biology, health and, increasingly, psychological predispositions. This information could have great medical value, en masse, but might be abused, ad hominem, by insurers, employers, politicians and civil servants. Some countries are building up DNA databases, initially using the excuse that these are for the identification and prosecution of criminals, but also including the unprosecuted and the acquitted. Should such databases be made universal? Is it ever right for the DNA of the innocent to be used for any purpose without the consent of the “owner”. If so, when? The Moderator-Mar 24th 2009 | Mr Geoff Carr
Clarke’s Third Law (the Clarke in question being Sir Arthur C., a distinguished writer of science fiction) is that any sufficiently advanced technology is indistinguishable from magic. That law applies nicely to the modern science and technology of genetics. On the one hand, understanding and eventually manipulating genes may lead to the treatment and even abolition of many diseases by white-magical (or, at least, white-coated) sorcerer-priests. On the other, dark necromancers plot to use the knowledge that genetics brings to regulate and manipulate people on behalf of commercial and political princes. Magic, of course, depends on the audience not understanding what the conjurer is up to. That was Clarke’s point. In the case of a stage show, the deception is both deliberate on the part of the conjurer and self-inflicted on the part of the audience, who would enjoy the show less if they know how the tricks were done.
Which is fine for show business, but is no way to conduct public policy. Hence the need for a serious debate on the matter, to which The Economist is privileged to make this small contribution. For the truth, as both of our opening “speakers” eloquently illuminate, is that the potential of genetics for both good and ill is great. And the more profound truth is that decisions will have to be made soon about how much genetic privacy a person is entitled to, even before those two potentials are properly understood. The accurate interpretation of the human genome is only just beginning, and where it will lead, no one knows. It is only recently, for example, that whole new classes of gene whose products regulate the functions of other genes, rather than being used as templates for the manufacture of proteins, have been identified. Other surprises surely await. Art Caplan and Craig Venter are two of the most distinguished thinkers in their fields, but those fields are different and, in the end, it is probably the differences between their fields that lead to the distinction in their positions.
Dr Venter is a geneticist with a background in the American navy’s medical corps (he served in Vietnam). He has always been a man in a hurry. His team was the first to obtain the complete genetic sequence of a bacterium (an organism called Haemophilus influenzae), and he led the privately financed version of the effort to sequence the human genome, a project that both succeeded in its own right and chivvied publicly financed scientists to redouble their own efforts. Now, he wants to hurry genetic knowledge into the public arena so that the wider pattern can be seen, understood and acted on for the greater good. His mission might be summarised by Hippocrates’s injunction: “I will prescribe regimens for the good of my patients according to my ability and my judgment.” Dr Caplan’s background, by contrast, is in the history and philosophy of science. The history of genetics is well known as one in which both ignorance and deliberate distortion of the truth have led to evil consequences—not just in essentially wicked regimes such as that of Nazi Germany, but even in apparently benign places like Sweden and also in the United States.
The eugenics that led to the castration of the “feebleminded” and the death camps for those deemed to belong to “inferior races” were the descendants of well-meaning, liberal-minded policies intended to improve the condition of humanity. Dr Caplan therefore draws a different lesson from Hippocrates: “Never do harm to anyone”, and argues that it is the individual who is best placed to judge what will harm him. At bottom, the two speakers’ arguments come down to the oldest political argument of all—how do you balance private and public interests?—with the added twist of ignorance about how the science will eventually play out. It should be a fascinating debate.
The Proposers-Mar 24th 2009 | Professor Arthur Caplan
There are, it is increasingly said, plenty of reasons why people you know and many you don’t ought to have access to your DNA or data that are derived from it. Have you ever had sexual relations outside a single, monogamous relationship? Well then, any children who resulted from your hanky-panky might legitimately want access to your DNA to establish paternity or maternity. If various serious diseases run in your family then shouldn’t your loved ones expect you to provide a sample of your DNA so that the family can establish who is and is not at risk of inheriting a disposition to the disease with greater accuracy. If you are young and eligible for military service the desk-jockeys of the military bureaucracy will want to keep a sample of your DNA handy in frozen storage should you encounter misfortune resulting in only tiny smidgens of yourself being all that is left. DNA banks prevent memorials to unknown soldiers. If you are a baby or a child, your parents rightly want to have a DNA sample on file so they can either identify you should you go missing or to help profile your behavioural and disease genetic risk factors so that they can take steps to improve your lot in life.
The police might well want to have a sample of your and everyone else’s DNA to make their lives easier as they try to sort through evidence at crime scenes. So might your boss, doctor, hospital, local university, pharmaceutical company, insurance company and national immigration service. Lots of reasons can be given about why genetic privacy ought to be abandoned for the greater good. But none of these is persuasive. No one should be peeking at your genes without your prior knowledge and consent. The main reason why your DNA and any data derived from it should be yours to control is that they are intimately linked to your personal identity. And your identity is an asset that should not be taken from you or accessed without your express permission. Those who wish to have your DNA, including the military, police, government, medical system, researchers and prosecutors all realise this. They know that they can track you, control you and even profit from you if they do not have to go through the nicety of asking for your permission to obtain or examine your DNA. But you should have the right to decide for what purpose someone can access any identifying information about you.
This is especially true for genetic information that can reveal sensitive things about your health, history and behaviour, past, present and future. You may well decide to donate your DNA in a familial study of disease risk, or to donate your DNA to a foundation or university for research; or to have your DNA stored so that you can be readily identified if something untoward were to happen to you; or you may decide to sell your DNA; or you may well decide to make your DNA available for a variety of purposes, but only if you receive convincing assurances that your personal identity will not be revealed to others; or you may not make it available unless you are paid. In any event, it must, if personal privacy and thus your autonomy and dignity are to have any meaning at all, be your choice. In modern society control over one’s own identity is crucial. People can steal your identity and pass themselves off as you, or they may simply use your identity to gain access to your personal information, records and data.
Your sense of self, of your security, of even your ability to maintain relationships and intimacies by controlling who can know about you, depends on control of your identity. Retaining control over your identity is something you need to be able to do and the government needs to be able to ensure that you can do. There are those who will say that the whole notion of genetic privacy is absurd. After all, your DNA can be pulled off a glass from which you have sipped, a cigarette you smoked, hair in a shower or anywhere else you might leave behind your sweat, spit, semen or dead skin. But the ready availability of your DNA does not mean that it is sound public policy to simply make access to it a freefire zone for which there are no penalties for those who peek without permission. The law can and should still seek to ensure privacy and make it clear what the penalties will be for non-consensual DNA sampling or use. Now it is true that some research with DNA can be done without identifying the source.
Even in these instances you should still have an absolute assurance that no one will reconnect your identity to such data without your assent. In addition to protecting your identity, it is important that you control your DNA in a world in which you might well suffer adverse consequences were others able to access and analyse your genome at their leisure or pleasure. Your prospective boss could decide that you are not the best person for a job, basing his decision on your genetic risk of suffering a mental illness or debilitating disease three or four decades hence. Your health or life insurer might be jacking up your rates or simply drop you out of a plan because of your risk profile.
And admission to college or even to a national security position might well be compromised by an unfavourable risk profile. Remember we are talking risk as the basis of penalties and discrimination, not actual events. Until societies legislate for adequate protections against risk discrimination, you are your own best guardian of your DNA. There are plenty of reasons for others to want to access your genes. Some of these are lofty, useful and admirable. Others are not. Unless something can be done to minimise the latter, the case for genetic privacy is quite strong.
The Opposition-Professor J. Craig Venter
As we progress from the first human genome to sequence hundreds, then thousands and then millions of individual genomes, the value for medicine and humanity will only come from the availability and analysis of comprehensive, public databases containing all these genome sequences along with as complete as possible phenotype descriptions of the individuals. All of us will benefit the most by sharing our information with the rest of humanity. In this world of instant internet, Facebook and Twitter, access to information about seemingly everything and everyone, the idea that we can keep anything completely confidential is becoming as antiquated as the typewriter. Today, in addition to my complete human genome, that of Jim Watson and some others, medical and genetic information is also readily shared between people on genetic social networking companies who provide gene scans for paying customers. It was my decision to disclose my genome and all that it holds, as it was Jim Watson’s and presumably all those others who chat online about their disease risks and ethno-geographic heritage.
So while we all have a right to disclose or not to disclose, we have to move on from the equally antiquated notion that genetic information is somehow sacred, to be hidden and protected at all costs. If we ever hope to gain medical value from human genetic information for preventing and treating disease, we have to understand what it can tell us and what it cannot. And most of all we have to stop fearing our DNA. When we look at our not so distant past it is easy to understand how the idea of the anonymity and protection of research subjects came to pass. The supposed science-based eugenics movement, the human experiment atrocities of the Nazis and the Tuskegee syphilis research debacle are just a few examples that prove that we as a society do not have a very good track record on the research front. So naturally when the idea first arose of decoding our human genome, the complete set of genetic material from which all human life springs, it was met largely with fear, including concern of how to adequately protect those involved as DNA donors.
Notions about genetics at the time were based on myth, superstition, misunderstanding, misinformation, misuse, fear, over-interpretation, abuse and overall ignorance propagated by the public, the press and—most surprisingly—even some in the scientific community. In the 1980s the state of genetic science was not very advanced and the limited tools available led to a very narrow view of human genetics. The only disease-gene associations made then were the rare cases in which changes in single genes in the genetic code could be linked to a disease. Examples include sickle cell anemia, Huntington’s disease and cystic fibrosis. As a result, most began to think that there would be one gene for each human trait and disease, and that we were largely subject to genetic determinism (you are what your genes say you are). An unfortunate slang developed in which people were described as having the “breast cancer gene” or the “cystic fibrosis gene” (instead of the precise way of describing that a mutation in the chloride ion channel associated with cystic fibrosis). In short, people learned that genetics could all be compared with a high-stakes lottery where you either drew the terrible gene that gave you the horrible disease or you got lucky and did not.
The notion of applying probability statistics to human genetic outcomes did reach the public. Today, the science has come a long way since those early days and we now know that there are many genetic changes in many genes associated with genetically inherited diseases like cancer. We also know that genetics is about probabilities and not yes or no answers. However, the public is, for the most part, still back on what they learned from scientists early on: genes determine life outcomes and so you had better not let anyone know the dirty secrets in your genome. So talk of sequencing the entire human genome created a sort of “perfect storm” of the colliding research ideals of human subject protection and anonymity. The publicly funded, government version of the human genome project went to extremes to use anonymous DNA donors for sequencing, even throwing out millions of dollars of work and data after at least one donor self-identified his contribution to the research. In contrast to the public human genome project, my team at Celera allowed DNA donors to self-identify but Celera itself was bound by confidentiality.
Since I was a donor to the Celera project, I thought that one of the best ways to help dissipate the fears of genetic information being misused, or used against me, was to self-disclose my participation as a DNA donor, thereby showing the world that I was not concerned about having my genome on the internet. My colleague at Celera, a Nobel laureate Hamilton Smith, later disclosed that he too was a DNA donor to the Celera genome sequence. My act of self-disclosure and using my own DNA for the first human genome sequence was extensively discussed and criticised by some at the time, including one of the Celera advisory board members, Art Caplan, who likened the genome sequence to the tomb of the Unknown Soldier and wanted it to remain anonymous. It might all now seem like a quaint historical discussion because of the onslaught of genome announcements and genome companies aiding thousands to share their genetic information with friends, family and the public at large.
In 2007 my team and I published my complete diploid genome sequence. This was followed a year later by Jim Watson disclosing his genome identity and releasing his DNA sequence to the internet. Several others have now followed from various parts of the globe. My institute wrestled with the IRB (Institutional review board) issues of sequencing the genome of a known donor as a break from the anonymous past. Following our effort, George Church, a researcher at Harvard, convinced the IRB there to allow full disclosure of multiple individual genomes as part of his project. He and his team have gone even further by including clinical and phenotype information on the internet along with his partial genome sequences. As we progress to sequence the huge number of human genomes, the value for medicine and humanity will only come from the availability of comprehensive, public databases with all these genome sequences, along with as complete as possible phenotype descriptions of the individuals.
Our human genomes are of sufficient complexity and variability that we need these genomes, with the corresponding phenotype data, to accurately move into the predictive and preventive medicine phase of human existence. The possible irony is that, other than as examples and testimonials of well-known individuals, the actual identity of donors is generally of little value to science. I had the right and the privilege to disclose my genetic code to all and I had the right not to do so. I feel that all humans should have the same right to choose. So while we actually don’t need people to step forward and identify themselves as donors and subjects in this research, there is no real need for them to remain anonymous, because there is little to fear and only much to be gained by information sharing.
In the United States the Genetic Information Nondiscrimination Act (GINA) was signed into law in May 2008 after more than a decade of trying to get it through congress. GINA is designed to prohibit health insurers and employers from discriminating against someone on the basis of their genetic information. In order that this protection should be global, other countries should do the same. We are learning more and more all the time about what our genes can tell us about our health and what they still cannot and probably will never tell us.
We have been beginning to see the fruits of our sequencing labours over the last decade but we still have so far to go in understanding our biology. Each and every one of us has a unique genetic code. Understanding our code can have a major impact on our life and health management, particularly in early disease detection and prevention. These advances will only happen with large comprehensive databases of shared information. Your genetic code is important to you, your family members and to the other 6.6 billion of us who are only 1-3% different from you. We will only gain that understanding by sharing our information with the rest of humanity.
University/College: University of Arkansas System
Type of paper: Thesis/Dissertation Chapter
Date: 6 October 2016
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