Until now it is evident that utilitarian considerations orient themselves on the collective benefit as “good”, without thereby intrinsically assuming elementary standards of justice. This applies especially to the utilitarian reverse of the current burden of proof, which demands a justification obligation from those who require participation in the research, but who misalign this obligation to those who do not wish to make their data and specimens available to biomedical research. In this section, it is intended to demonstrate why communitarian requirements toward the limitation of the personal private sphere should also be observed critically.
Bartha M. Knoppers and Ruth Chadwick postulated that the technological advance in medical research to date has permitted successfully practiced ethical principles such as autonomy, privacy, justice, quality, and equity to now appear to be outmoded. This trend posed a challenge to bioethics to include other, up to now, ignored ethical criteria. Knoppers and Chadwick determined that a new form or a new understanding of reciprocity is being established in human genetic research, which assumes the requirements of researchers as well as the requirements of the donors of physical specimens and personal data. Thus, not only more recognition for participation in human genetic studies was achieved, but rather diverse, comprehensive participation agreements were presented, which not only could address augmented preferences for individual participation, but rather permit the researcher more possibilities to use the specimens for various purposes. Furthermore, it is emphasized that mutuality is also a value that must be considered, since families demonstrate a common genetic pool; upon discovery of life-threatening genetic factors, relatives should not be left in ignorance about shared genes that are co-responsible causes of illnesses. In addition, it must be considered that genetic information can be understood not as individual but rather as collective “good” of the family.
Against the background of this interpretation of the profound interwoven status of the individual in social and especially familial relationships, Knoppers and Chadwick ask the question whether a social obligation does not exist to demonstrate responsibility and to make his own data available to general medical research in solidarity with (potential) invalids. In addition, the question is asked of the general citizenry to consider the medical-ethical problem not merely from an individual viewpoint, but rather either from a perspective of an entire technical discipline, an interest group, or even simply from the viewpoint that is represented by the whole society and therefore would be related to positions that clearly exceed the individual limits of interest groups. Finally, both indicate the principle of universality that a general obligation is derived from the commonality of genetic material of all humans to treat the weakness of genetic material constructively, not least through participation in studies which serve all of mankind (Knoppers and Chadwick 2005).
The trend that was identified and supported by Knoppers and Chadwick away from rather individual-oriented ethical principles, such as autonomy, privacy, justice, quality, and equity to more collective principles, such as reciprocity, mutuality, solidarity, citizenry, and universality can be critically analyzed with respect to “freedom”. In order to achieve a differentiated view, two different understandings of freedom, presented by the political theoretician and social philosopher Isaiah Berlin, can be used to investigate the communitarian approach since the question of health and research, which serves it, are ultimately also questions of freedom.Footnote 2 With his binary definition of positive and negative freedom, he created a multi-received (Carter et al. 2007; Miller 2006) categorical differentiation (Carter 2007), with which a complete series of freedom definitions can be differentiated and hence those that indicate to date a heuristic value in the question of emphasizing an individual right to privacy and the general, i.e., collective right to health provision. In connection with the philosopher Beate Rössler who differentiated informational, decisional, and local privacy (2005:9), a further step can be taken and the differentiation of positive and negative privacy can be extracted from the relationship of autonomy and Berlin’s definition of positive and negative freedom. Since freedom is twofold according to Berlin and from Rössler’s point of view, a fundamental condition of the realization of (twofold) freedom is autonomy; therefore, the existence of a yet to be defined private space is, in turn, de facto a prerequisite (Rössler 2005:9–10). In the following section, one can thus speak of negative as well as a positive private sphere. The relationship between freedom, autonomy, and privacy was explained by Rössler as follows:
“[W]e regard privacy as valuable because we regard autonomy as valuable, and because autonomy can only lived out in all its aspects and articulated in all its senses with the help of the conditions of privacy and by means of rights and claims to privacy. If the telos of freedom is conceived as being able to lead an autonomous life, then spelling out the conditions for such an autonomous life brings to light that civil liberties alone are not sufficient for the protection of autonomy, but that autonomy is reliant upon these civil liberties being substantialized in rights and claims regarding the protection of privacy. A person’s autonomy can be violated or impaired in ways that do not directly bear upon the civil liberties themselves, and it is because of this possibility that people are dependent in their autonomy upon the protection of privacy.” (Rössler 2005:9–10)
It is now imperative to further investigate this relationship between positive and negative freedom on the one hand and positive and negative privacy on the other hand for the sake of a critical examination with the self-designated communitarian position of Chadwick, Knoppers et al.
Concisely worded, Isaiah Berlin defined positive freedom as a freedom to something, while negative freedom was paraphrased by him as a freedom from something (Berlin 1990:131). The positive freedom thus signifies possibilities that arise in the sense of realizing freedom to do or become something and thereby to self-actualize. It is derived from the need of the individual to fashion his own life and to make decisions dependent on himself instead on external factors. Berlin formulated:
I wish to be the instrument of my own, not of other men’s, acts of will. I wish to be a subject, not an object; to be moved by reasons, by conscious purposes, which are my own, not by causes which affect me, as it were, from outside. I wish to be somebody, not nobody; a doer—deciding, not being decided for, self-directed and not acted upon by external nature or by other men as if I were a thing, or an animal, or a slave incapable of playing a human role, that is, of conceiving goals and policies of my own and realizing them. (Berlin 1990:131)
Applied to the context of biomedical research, positive freedom means to have the intrinsic motivation to make one’s own DNA and medically relevant data available to a biobank in order to minimize the morbidity and mortality of humans. This would be an instance of positive freedom, since this decision is taken without outside pressure and is the result of free, own decision. Additionally, the personal, private portion is not hidden, but rather implemented for the benefit of many in public, similar to utilization of political, positive freedom, introducing one’s self into public discourse, and the possibility of being able to utilize democratization or self-government.Footnote 3 However, it appears problematic that a volunteer would deposit parts or substances of his own body in biobanks, if he could not determine their application, in any case not in their entirety and at all times. This would be equivalent to a limitation of positive freedom, because the right of self-determination finds its limit in the content of the signed informed consent and thus the complete self-determination is no longer given as a fundamental condition of positive freedom. In fact this is less the case with a detailed informed consent, where an explicit consent must be given to one concrete research and researchers must be bound to the concrete wishes of the volunteer, but the alternative form of broad consent and open consent or generic consent offer the researchers a broader latitude in which they no longer must coordinate in detail with the volunteers and thereby can significantly limit positive freedom.
Admittedly, Berlin had determined that the idea of positive freedom can also be abused. In fact, different instances come into consideration that can direct one’s own life, such as the “nature” of mankind, one’s own understanding, a leading idea, and the “elevated” self. However, logical reasoning is usually given preference above all else that is defined as being irrational. Mankind is then broken down into a rational, autonomous and a (to some extent) irrational, “empiric” heteronymous self; both parts can be pitted against each other. The higher autonomous self must defend himself against the lower, heterogeneous nature; the latter must be disciplined and domesticated (Berlin 1990:132).
A problematic aspect of this splitting by Isaiah Berlin is consequently the possibility of being able to legitimize obligations on the rational level with emphasis on rationality which can no longer clearly be differentiated from coercion. Berlin phrased in the following way:
This renders it easy for me to conceive of myself as coercing others for their own sake, in their, not my, interest. I am then claiming that I know what they truly need better than they know it themselves. (…) Once I take this view, I am in a position to ignore the actual wishes of men or societies, to bully, oppress, torture them in the name, and on behalf, of their ‘real’ selves, in the secure knowledge that whatever is the true goal of man (happiness, fulfillment of duty, wisdom, a just society, self-fulfillment) must be identical with his freedom—the free choice of his “true”, albeit submerged and inarticulate, self. (Berlin 1990:133)
In a clinical scenario, this could signify that if a moment of decision-making for or against participation in a study would cause a conflict between reason and moral intuition, the doctor as well as the researcher could persist in the primacy of rationality, be it derived from trust in communitarian values or be it derived from self-serving motives. If the moral intuition urged a rejection, since anxiety exists in the background about the misuse of donated DNA or data and the desire for negative freedom would be manifested, the doctor or researcher could propagate communitarian ideals on the level of understanding, such as solidarity and universality; he could thus promote a paradigm of positive freedom. Since in our cultural area, reason tends to be given the advantage and it awakens the appearance of self-evidence, it would be difficult to avoid well-intentioned arguments; thus, a dependent moment of decision would be created. This would be legitimized given that an object of suppression, if he were only more rational and enlightened, would exhibit a different behavior without coercion. “True motives” would be projected into the person to be coerced who is allegedly merely overshadowed by an empirical being; therefore they must be liberated through compulsory measures. An arbitrary situation would indeed not be created, because the communitarian, ethical framework should apply to everyone; however, the freedom of mankind would be curtailed, as described in a special manner by John Harris and C.D. Herrera.
The oppressive situation to be feared turns out to be relevant even by inspecting the argument of Bartha Knoppers and Ruth Chadwick. Thus, real dangers in fact exist that stigmatization, discrimination, and not yet foreseeable future dangers could appear for a volunteer, which are given through ever-improved possibilities for the interpretation of DNA, medical, and lifestyle-related data (Murray 1997). However, they could rapidly appear as improbable individual risks by certain interpretations of a doctor or researcher, which still appear to be acceptable with regard to higher values such as reciprocity, mutuality, solidarity, citizenry, and universality (Knoppers and Chadwick 2005). Those arguments permit a “reasonable” person no other choice but the participation in human genome research. Thus, it is not surprising that even Ruth Chadwick quite early posed the question, whether at least a moral obligation to participate in human genome studies should exist, and thereby proposed the same requirements as utilitarian bioethicists:
We also contend that the benefits of research could be shared more widely by those who profit, and that there is a duty to participate in research that could move medicine forwards on the basis of solidarity. It is questionable whether individuals should be free, from an ethical point of view, to refuse to help in an effort to relieve suffering for what could be regarded as trivial reasons, such as refusing to allow samples to be reused for research on drug abuse because of the disapproval of drug users. (…) [N]ow might be the time for a fresh ethical perspective. (Chadwick and Berg 2001:321)
Ruth Chadwick herself indicates significantly in a later article that was published together with Lunshof et al. (2008b) that the private sphere is often endangered by participating in human genome studies, but they seek simultaneously to reduce the need to protect the private sphere, in order to eliminate the greatest possible obstacles from scientific research.
If the private sphere is endangered, negative freedom is thus affected, which marks an especially protected zone; according to Beate Rössler, it represents a core element of liberal democracies (2005:9–10). The negative freedom in the sense of freedom from something signifies accordingly the absence of limitations, coercion, and hindrances by other people, especially by government authority (Berlin 1990:122–131):
By being free in this sense I mean not being interfered with by others. The wider the area of non-interference the wider my freedom. (Berlin 1990:123)
Even when people strive for other values in addition to freedom, such as justice, happiness, culture, security, and equality and would even accept relinquishing a portion of their freedom (and if one proceeds further than Berlin and must question more intently the material, ideal, and social conditions to enable this negative freedom), a lower limit of personal freedom must remain protected nevertheless by all means. Without it, people would be robbed of a nucleus, which empowers the development of those capabilities that they need for the achievement of their own goal. Therefore, a clear limit is absolutely necessary between the area of private life and that of public authority (Berlin 1990:123–124). With a reference to John Stuart Mill, he reminds us that there can be no progress without a private place of leisure:
[U]nless men are left to live as they wish ‘in the path which merely concerns themselves’, civilization cannot advance; the truth will not, for lack of a free market in ideas, come to light; there will be no scope for spontaneity, originality, genius, for mental energy, for moral courage. Society will be crushed by the weight of ‘collective mediocrity’. Whatever is rich and diversified will be crushed by the weight of custom, by men’s constant tendency to conformity, which breeds only ‘withered capacities’, ‘pinched and hidebound’, ‘cramped and warped’ human beings. (…) ‘All the errors which a man is likely to commit against advice and warning are far outweighed by the evil of allowing others to constrain him to what they deem is good.’ (Berlin 1990:127)
Transposed onto the handling of the private sphere in biobanks, negative freedom means that the DNA, which is stored in combination with phenotypic relevant data, can (but not must) lead to stigmatization and discrimination, on the basis of an unauthorized or undesired evaluation (Lemke and Lohkamp 2005), and therefore, a protection requirement normally exists for DNA donors. This protection requirement can also be designated as a negative private sphere and thus creates a heuristic tool, in order to be able to differentiate between voluntary participation and the need for protection; however, this leads to a dichotomy which should be resolved in the following section.